Ashley Elliott, The Road to Sobriety; A Call for Resources in Rural Communities to Combat Drug Usage, Stigma & Addiction.

"The more we talk the more we bring it out and the more we bring it up, I think the quicker we can get past the stigma. Get past the negativity of addiction and see it simply as what it is and that's a disease" Ashley Elliot.

 


Ashley’s Health Journey Through Addiction

My story more often than not, coincides with addiction. I am a recovering heroin addict. I've been clean since December 28th 2012 and since I've gotten clean I decided to take a path to help others whenever they're struggling. I know for me when I felt hopeless if it wasn't for the women in my life that had lifted me up I don't think I would have made it .

My goal is to help those find hope that think there's no hope. In my darkest days I would say I probably had no idea what was going on at any given time. I went from being an all honor student in my freshman and sophomore years of high school-- straight A's to slowly decreasing my workload. I was a merit student my junior year and by the time was a senior I was a general student. Luckily enough I still graduated with merit a diploma.

That was the start of the dark days that really just kind of involved drinking along with experimenting with a few different substances, nothing too extreme. By the time I had graduated high school I would consider myself pretty deep into my addiction not rock bottom but still pretty deep. What would happen over the next twelve years would be me finding my own, falling in love.

I always made the joke that heroin was my first love, it never failed me, it never let me down. Every time I wanted to do something it changed the way I felt, it did just that. After that point it was really weird. I went from using to needing and I don't remember it. I don't remember when I went from recreational use to addiction, to dependency.

I would go through several different treatment centers, methadone centers. I tried suboxone. I tried moving to California. I thought if I just packed my bags, leave and go somewhere else where nobody knew me I could just start over and be whoever I wanted to be. The problem with that is wherever you go there you are you know. At that time I didn't realize the problem was me. I thought it was the drugs. I was in two very abusive relationships. The first one was we were living in Nevada and he ended up head-butting me and breaking my nose in the front lawn of our home. Shortly after that I had ended up running into an old friend out in California. She saw me and I think I’d probably been about 140lbs at the time. My collar bones were sticking out, I was rather frail. She bought me a plane ticket and three days later I came home.

When I came home I just got involved with the same people. When I did that, that’s is when the legal stuff started happening. The first time I ever got I trouble I had actually lived right up the street. The apartment that I was living in got raided and that was the first time I had been arrested. After that point it was just one after another getting arrested. Eventually I tried to do it on my own. Got involved with another boyfriend who was rather abusive. Fast forward my first treatment center I decided to leave AA, which is against medical advice. My thought process was; I was going to leave, come home, use go to court and go to jail

I was okay with that. I thought that was a solid plan to me. That's how crazy the disease of addiction is. I did that, I left, I came home, I used, went to court and the judge said “Punish her to rehab”, which was not a part of my plan. Over the next two months I had to wait 30 days because I left AA. I had to wait another 30 days for a bed to open up. Within those two months the apartment I was living in had burned down. Under the Influence I had fallen asleep on my hand for an extended period of time which caused something called Saturday Night Palsy.

It’s where an addict or an alcoholic passes out on the extremity and does nerve damage. I had no use of my hand for over three months. I was an I.V. user and there was a point in time where a needle had broken off into my arm and I left it there for six years until I had gotten clean and got a straight head on and I had surgery to have that removed. My kidney functions are extremely low. The way they explained it to me is that my kidney function is that of a 70 year old. I think that's due to all of the different opioids and the wear and tear on the body.

Emotional Health and Addiction

A big part of the health effects is the emotional state that people wanders in while being in addiction---I'm a very outgoing person and I can talk to just about anyone, anywhere about anything. When I was using, I was afraid to leave my house. I'd lived less than two or three hundred yards from a grocery store and it took everything inside of me to get up, get myself dressed to go to the grocery store just because my anxiety levels were so high. A lot of people use to try and escape their feelings of depression or anxiety.

In reality the only thing it does is increase this. I was going through panic attacks, and a lot of the different medications. I was having on medication induced seizures. I just think of it I felt like my body just couldn't go anymore. My sister pointed it out the most. The way that my family always knew I was using, was how much I weighed because I would get her periods of extreme weight loss while using and then gaining that back while attempting to get clean. The health effects I had have lasting effects, psychologically, physically, and emotionally. It takes a long time to heal all that stuff, to accept it, deal with it and move forward with it.

Finding a Support System in a Sponsor

I do honestly say that without my sponsorship family I don't think I would still be clean today. When I went into treatment the first thing I told my counselor was “I'm going to tell you I want to go home, not to let me go home. Don’t let me go home”. But she didn’t, she relocated me to a halfway house down in Frederick Maryland. While you're in treatment it's basically almost like a brainwash. I’ll say if I needed to be brainwashed to get away from whatever I was doing before I was totally okay with it. I really got involved in a twelve step program. It took me about six months after I was really involved in the program to be clean.

The reason that is like I said look for my clean is December 28, 2012. This was the first year I was down in Frederick, I was my first Christmas. I remember I was getting ready to come home and my sponsor and I had come up with this plan where I stay at my sister's, she's my safe zone. No contact with old friends or ex’s. I didn't do anything she suggested. When I went home I think the first thing I did was contact my ex. he brought my dog over. My sister's kids were so I ended up staying at my parents which I ended up using, so I'd used all over Christmas. It was December 27th, my best friend and my sponsorship family called me to wish me a Merry Christmas. I thought what we had was just a normal conversation. When I got off the phone probably less than five minutes later my sponsor called me and trying to walk me through my thought process.

I had my dog which meant I saw my ex, I was at my parents which is not a good place for me. She was trying to get me to realize all the decisions I was making weren’t necessarily the best ones. The last thing she said to me was---she worked the night shift as a security guard at a prison and she said “I don't have to work tonight. I don't know if you want to white knuckle your way through this situation, but if you don't I'll come and get you”. I was kind of just like “Okay you know I'll think about it. I'll call you back”.

When I hung up the phone it was at that moment that I realize that these people that I barely knew six months really wanted nothing but the best for me. I think that was my reality check. I ended up calling her back and I said “Come get me”. My sponsor and my best friend drove three and a half hours from Frederick up to Garrett County in the middle of a snow storm to pick me up and take me back home. That’s why I consider the 28th my clean date because I haven’t used since. I don’t drink, I pretty much don’t do anything.

Trials During Recovery

Throughout my early recovery and my first year or two I remember a period where it was around my first year clean and they say in the twelve step program that at your anniversaries you start going crazy. That's what I was experiencing. It was around my first year I had no idea why but I just wanted to mess things up. You know I knew I couldn't quit my job because I needed my job. I liked my friends so I didn't want to screw anything up with them.

I just couldn't come up with anything to ruin, but that's all I was thinking about because I was an addict. A lot of times my first thought is self-destruction especially when I can’t deal with feelings whether they be good or bad. I remember texting both my sponsor and my best friend and telling them that everything I was doing was reminding me of using.

My best friend sent me this long message of all of the things she knew about me through my active addiction, including you know the abusive ex's and going to jail and all that stuff. Then she sent me another message of everything that we had done in recovery and now. I'm saying your first year of recovery I lived more than I did in those twelve years of using even though I went all over the place, California, Nevada etc.. I still didn't really experience anything because I was never present in the movement. When she sent that to me she followed it up with “Think about those two and then tell me if you still want to use”. I was living with my sponsor at the time, I’d gotten home and she told me to get dressed and I didn't know why, she didn't tell me. She just tell me to get dressed.

I got dressed and my grand sponsor, which was her sponsor showed up and they took me to a baseball game and made me sit there. I sat at this baseball game and I cried. I cried and I cried and I cried and my grand sponsor's theory was always “When you don't know what to do you sit on your hands”. That's what I did. I just had to sit through it and here I am at the Frederick baseball game, everyone’s having a heyday and I'm bawling because honestly I don't know why.

Situations like that, like if they weren't there for me in those moments, if I were to allow my own thought process to continue I eventually would have came up with the idea of the best solution right now is to go use. I strongly agree that a social support, an emotional support, it is a key component of recovery, you cant do it alone. It’s a lot easier when you have people who understand what you've been through.

Sobriety & Stigma from the Medical Setting to Society.

I know for me sometimes it's tough with my health issue trying to talk to a doctor and being taken seriously. I'm a recovering addict and once they hear that, the word human being goes out the window. It's definitely tough and sometimes you've got to have thick skin because there are some pretty mean people that have a very closed mind and aren't very understanding. I kind of just smile and nod at those people. It’s been six years since I entered my first treatment center and in two days I'll graduate from college. That's crazy to me to think back to where I was.

Sharing Story to Impact Change

I remember when I went to MedX to speak on a panel session. Standing outside and seeing the big sign that said Stanford University and I just thought to myself “How did I get here?” I didn't understand it was so weird. I do attribute it a lot of this to Regina Holliday. If Regina hadn't brought me to Cinderblocks, if she wouldn't have asked me to share my story, all of these other people wouldn’t have heard it and I wouldn’t have had the opportunities that I've had over the past year. I remember when I told my family what was wrong with me, what was wrong with me being addicted to drugs at that time.

It was suggested to me by my counselor at the treatment center that I was at. I was an outpatient methadone treatment center. I gather my family together granted my family is well known in the community. My brother in the department of juvenile justice for 20 years. He’s the Cub Scout leader. Everybody knows my brother, both my sisters, one’s a teacher an elementary school teacher and the other one is a guidance counselor secretary. You could definitely say I was the black sheep of the family and I remember when I told them they didn't understand because they didn't know and they didn't know anything about it.

Public Health, Education & Addiction

If people were more educated about addiction, what causes it. The interactions, the pharmacology between the different substances. How they affect the brain. Just stepping outside of their shoes and trying to look at it from a different perspective I think that would have a huge impact on things. A lot of people feel shame and guilt because of their addiction and are embarrassed to talk about it. One of the doctors on the panel at MedX said it best, for years addicts have been lepers. That's what we are once you have that label there's no turning back. Again, when people don't have that in mind, the empathy or compassion to understand, they don't get it.

It’s a fruitless battle. I definitely feel that education, knowledge, understanding simple human being decency is needed. Nobody deserves to die no matter what they choose to do or chose to do it, I hear that a lot. “They chose to use so they deserve to die”. I can speak from experience that there were many times I used against my own will. I did want to be doing what I was doing but I knew physically I couldn’t go on without it because I was dependent on it. In our twelve step program we say “Drugs aren't the issue. Drugs are side effects of addiction”. Our real problem is the way that we think and the way that we feel and not being able to cope with those things. It's exhausting and it's long it does take a lot of motivation. I would say self-will but that's really nothing at all one has to deal with.

A Call for Resources in Rural Communities.

Whenever I was using in this small town I had no idea about resources because it wasn't something people talked about. I remember going to treatment and going to my first twelve step program and they're like “You’ve never been to a meeting before?” and I had no idea what a meeting was. I didn't have the resources here. The more we talk the more we bring it out and the more we bring it up, I think the quicker we can get past the stigma.

Get past the negativity of addiction and see it simply as what it is and that's a disease. Much like a diabetic who takes their insulin every day, an addict get a daily reprieve by simply choosing not to use and more often than not when the addict that chooses not to use is a miracle. Because everything in my being says use, use, use and every day that I choose not to do that is a miracle and nothing short of that.


Ashley Elliott is a recovering addict, patient advocate, psychology major, guest speaker at Medicine X and repeated speaker at Regina Holliday’s Cinderblocks5

Contact Ashley Elliott: Twitter

Lilly Stairs | Patients Have Power!

"There are studies that show that women are unfortunately not always believed by physicians that they are in pain. They are put in the situation where they need to prove their pain, there are countless studies on this" Lilly Stairs.


Lilly Stairs is the head of Patient Advocacy at Clara Health. A company working to connect patient’s clinical trials and also a patient living with psoriatic arthritis diagnosed at age seven and crohn's disease. 

 

Psoriasis Diagnosis at Age Seven

First of all at the age of seven I was actually diagnosed with psoriasis. Mine was gutty so it looked like chicken pox all over my body. I was never told that it was an autoimmune disease. I was also never told that 30% of people that were diagnosis psoriasis will actually get psoriatic arthritis. So fast forward many years to when I turned nineteen I was actually just over the course of the summer and I started to develop this underlying pain.
Then one day I woke up and I literally just couldn’t even move. I was to the point where my mom had to dress me, she had to feed me and my whole body was paralyzed with pain. It was at that point that I was diagnosed with psoriatic arthritis.When I say pain I mean I was put on a whole slew of narcotics and none of them did anything to help. At the age of nineteen, two autoimmune diseases weren’t enough, so we had to add a third and I was diagnosed with crohn's disease six months after psoriatic arthritis diagnosis.
That actually happened after I was in and out of the ER three times in one weekend. The doctors at the ER unfortunately didn't believe I was dealing with pain. I would try to swallow water, I was in agonizing pain just trying to swallow water. It was absolutely awful. They thought that I was just trying to get access to pain meds. Finally the third time I went to the E.R. I was finally admitted, I was in the hospital for a week, they ran a series of tests. Finally they did a capsule endoscopy and that's when they found bleeding ulcers in my small intestine and I was diagnosed with crohn's disease.

Women, Autoimmune Disease and Pain

About 75% of the patients who are living with autoimmune diseases are actually women. There are studies that show that women are unfortunately not always believed by physicians that they are in pain. They are put in the situation where they need to prove their pain, there are countless studies on this. This has happened for so many patients living with autoimmune disease and it’s something that really happen to me as well. I had gone into the ER three times in this agonizing pain, pain I had unlike anything I ever experienced and they didn't believe me.
They thought I just wanted morphine, that I was trying to get access to drugs or that it was all in my head. Here I was this very happy otherwise healthy 19 year old who wanted to be back in school, wanted to be back in college, didn't want to be in the hospital bed but here it was. I was afraid because nobody believed me and I didn’t know that I was going to get the treatment I needed. So we need to see a change of mindset, a shift in mindset in some of these physicians---out of the idea that----acknowledging these biases that the health care system has against women.

Access, Insurers and Healthcare

I have been incredibly fortunate when it comes to access in my experience as a patient. I have had insurance throughout the entire time and they’ve or actually been really wonderful about covering the medicines that my doctors prescribe. This is refreshing, because with the work I do oftentimes I hear about how patients do not get access to the medicine their physician wants them to be on. Right now we have insurers playing doctors and saying “Well I know your physician wants you on this medicine but we’ve cut a deal with this person and so we need to give you this medication first or you have to go through step therapy before you can get to the medication that you need”. So I have been fortunate, in that every single medicine my physician has prescribed I’ve been able to get access to it.

 

Defining Step Therapy; From the Perspective of A patient living with Autoimmune Disease.

Step therapy is when you are forced--- this happens a lot to autoimmune disease patients.  When you are forced to go through a series of medications before you can get to the one that your physician wants you to be on. So it makes you try something and some of these medications maybe they're less expensive, maybe they are less potent than some of the other medications. But they are making you go through it because the insurance company wants to make sure that they're not spending extra money.
What I will tell you is that unfortunately, with many autoimmune disease patients their disease progresses because they don't get access to the right medication. For example, let's say I'm a patient who’s just been diagnosed with crohn's disease and my doctor wants to put me on what's called a biologic, but they're not going to let me go on the biologic.
My disease is very severe but the insurance company says “No she has to try this drug, and this drug before she can get access to that biologic”, the biological that my doctor wants me to be on. During the time that I have to try X, try and fail X. Y. and Z, go through these steps, my disease progresses, and some people’s diseases progress so much that they need surgery. In the end has the insurance company saved any money? No because now they have to pay for surgery.

Therefore, step therapy is bananas to me, it doesn't make any sense. Its intended to save money and it's not. So we need to re-evaluate what that looks like, maybe that's worked for other diseases in the past but with these complex chronic illnesses it's not OK. Medical switching is when insurers are playing doctor. So let's say my doctor wants me on a medication ---- you have biologics which are these entire class of medications. They tend to treat patients with autoimmune diseases. Insurance companies view them as being all in one class and therefore they're all the same, so they're interchangeable.

The problem is that if my doctor wants me on a drug that have a specific target---i.e they all have different mechanisms of action everybody biologic. If my doctor wants me on a drug IL12 and 26 the Interleukin 12 and 26 that specific mechanism of action. Sometimes the insurance company could turn around and say “No we want to put her on a different biologic that's an anti TNF inhibitor”, but anti TNF inhibitor don’t work for me. So they're just saying “Oh they're all biologics, they’re all in the same class its fine. This is our preferred drug she needs to be on so that”. Then the insurance company comes back and they literally change the prescription that the doctor prescribed to the patient. That’s how the insurance company is getting involved in the decision between the doctor and the patient.

The need for change in step therapy practices.

How is this legal? It’s a great question. I don't know! I actually sat on a commission in Massachusetts this past year where we did some research on how dangerous this practice can be. How it actually costs the Commonwealth. The report hasn’t been release yet but I’m hoping it's going to be released soon. I am also hoping that there is going to be a bill that is put into place to prevent this from happening. We’re just starting to see non-medical switching bills come out. They are detrimental to patients truly and It’s difficult.

 

Dealing with Stigma while Living with Chronic Illnesses

It is so difficult to live with chronic illnesses when you are a child, teen, young adult into adulthood. At the time (during childhood) I remember when I was that and had the psoriasis I was so afraid for other people to see it at school because I didn't want them to think they were going to get it or that it was contagious. I always felt very uncomfortable wearing like a T-shirt, it was embarrassing for me. Then here I am at age 19 with arthritis. You think only old people get arthritis or that's the mentality that we have in society, when in reality they're actually so many young people who are living with arthritis. It kind of gives you a complex right.
Then you have to deal with “OK now dating is in the picture and how do I talk to somebody about the fact that I have these chronic illnesses and are they going to, or will anybody ever love me”. These are the things that run through your head when you’re first diagnosed, that's why I think it's so important that we have advocates out there. We have some amazing chronic illness advocates in the community who talk about what it’s to live with chronic illness and give other people hope that it's going to be okay.

Switching into the Role of a Patient Advocate

I’ve always been a person who is for the underdog and I think it's been a part of my nature. From the time that I was in the hospital bed---- let's say I was in the hospital bed for crohn's disease this was my third autoimmune diagnosis. Keep in mind, I had never heard the word autoimmune before. I’ve never heard the word autoimmune and I was now living with three diagnosis.
How is that possible? There are 50 million Americans who are living with an autoimmune disease. For a point of reference that's about twice as many as cancer and we all know somebody living with cancer right. There’s twice as many people with autoimmune diseases but we’re not talking about them. I remember being in that hospital bed and saying “This isn't right. This is something that I'm living with and I had no idea I never even heard about it before”. I felt compelled from that moment in time if this was my reason for being.
This is something that I needed to do help others. And so from that moment I actually left the hospital---actually while I was in the hospital I kind of started cooking up ideas for ways that I could help start to raise awareness. Then began the journey through the healing process, through my journey into remission. I spent time I got on Twitter and I started talking to fellow advocates, I said “I want to blog about my experiences. I want other young women and young people who are diagnosed of these diseases to know it’s going to be okay”. I just I knew from the moment I was in the hospital bed that it was really my calling that I needed to help others.

Visible and Invisible Illnesses

It’s hard to say advantages and disadvantage when it comes to physical versus invisible. And it's interesting because I've had conversations with other patients who have a physical disability. We’ve talked about the fact that, OK I have a physical disability somebody has a physical disability that so people automatically understand right. They maybe have empathy for you right away. But also people with physical disabilities get frustrated because they don't want people to now treat them differently necessarily. This woman was telling me once she says “People will like talk to me like I'm a baby, and I'm OK. I'm in a wheelchair but I'm fine”. There is an automatic empathy there. Invisible illness, it’s tough. People don't get it, they don't understand that when I am standing there and I look OK and I put makeup on the morning I might be exhausted. I might be to the point where I can barely talk I’m so tired. I can barely take a shower I’m so tired. But nobody can see that and they think I look fine so they think everything is okay.
I'll never forget I was on the MBTA, the local Boston public transit and I was coming back from work and I was in so much pain, my arthritis was flaring, I was sitting and an older woman got on to the train. People were looking at me like I should stand up to give her my seat, I was like “These people probably don't even know I am in worse condition than this older elderly lady standing here”. But, nobody saw that people just see what they think is a healthy 19 year old. In terms of society these preconceived notions and assumptions that people have about diseases can be really frustrating.
When people had found out that I have crohn's disease they’re like “Oh isn’t that a disease where you run to the bathroom a lot” I’m like “No, that’s not actually what my experience has been”. I actually have bleeding ulcers in my small intestine and that was the only symptom I presented with. Now that wasn’t a great symptom to be living with but that's a very different experience. Then when people say “Oh I thought only old people get arthritis”. Okay a little bit joke “you’re like an old lady” and it's OK, you get used to it but it can be a little frustrating.

Addressing Societal Stigma

Try to be open and understanding that all these diseases present very differently for each person and being respectful of what somebody is going through. Also, not jumping to the conclusion that like just because I look OK means that I am capable of doing everything that somebody else is doing. Sometimes I’m going to be so exhausted I can't go out to dinner because I physically don't even want to hold myself up, I just want to lie down and sleep.

Desires for the future of healthcare

If I had a magic wand! Oh god do we have 24 hours for me to just talk and tell you all the things I want fixed. I will tell you one of the most devastating things I have seen and thank God it hasn't happened to me. But one of the worst things I have seen from my work at Clara and my work with patients and advocates is the financial devastation that chronic illness can put on patients and families. I have watched and heard the stories of patients who they have jobs, they are contributing members of society, they have families and all of a sudden they are diagnosed with chronic illness in their insurance doesn’t cover the medicine they need you know they have so many medical bills that they just can't afford to keep up and they go bankrupt.
They lose everything and they were doing everything right. Although, they had jobs they were contributing to society, they lost it all. That is not fair. Because they were dealt this, they got this disease, they didn't ask for this disease. They didn’t asked to be diagnosed with a chronic illness, they didn’t do anything to prompt them to be diagnosed with a chronic illness. But here they are and this is the hand they've been dealt. They are not being supported by our current system as it stands and I have a huge problem with that.

Finding & Facilitating Patient Empowerment and Advocacy at Clara Health

I knew I wanted to dedicate both my personal and professional life to patient advocacy from the time I was in the hospital bed. I discovered through some of the work that I had done in healthcare already that the patient voice was missing in a lot of what we were doing. It's really interesting because I think the biotech industry has actually done a decent job bringing the piece of patients of patient voice in over the past ten or so years, but we're not seeing that on some of the health tech and digital side of things. So, it was really exciting when Clara Health brought me on as their head of patient advocacy and one of the founding members of the team.
It was refreshing to see that they wanted the patient voice in there from the beginning and so through this I have had the opportunity to both champion the patient voce internally and externally. What is most important to me is that we are doing is that is that we are empowering patients with the knowledge that they have the power in their healthcare journey. They own it, they make their treatment decisions, they decide how their care is managed. It is up to you, it's up to you to own that and to feel empowered to own that.
I think they lack that just because when we talk about this, i.e the societal constructs that are in place when you look at the doctor patient relationship. Patients need to know that this is my body, this is my choice what I do with it and I have every right to seek a second opinion. I have every right to challenge this diagnosis. I have every right to challenge the treatment options. That’s really important and so for me to have the platform to be able to do that with Clara Health has been amazing. To work on the Patients Have Power Campaign and empower other patients with this knowledge I couldn't ask for a better job.

Patients Have Power!

Patients have Power means to me that patient’s own their journey. It means all of those advocates that I have the opportunity to work with every day. I work with so many patients who inspire me to be more empowered in my healthcare journey, who are inspiring others every day to be empowered in their health care journey. We as a community are powerful. We collectively as patients have power and that’s what it means to me.

Contact info

Lilly Stairs: Website | Twitter | Instagram  

Clara Health: Website | Twitter | Instagram 

Brigette McKern | Patient Advocate | Double Lung Transplant Recipient

"I remember the day I was told in the doctor's office; obviously they tell you that you're at end stage cystic fibrosis, meaning without any treatment, you probably have a year to live and lung transplant doesn't cure it, but it can extend your life" Brigette Mckern.


Introducing Brigette Mckern and her Journey Living With Cystic Fibrosis

My name's Bridget McKern, I'm 36, I'm right now. I'm mostly a professional patient and I do work part time as well in a library. Right now I am just maintaining my health and I hope to travel more. That's my plan. When we look with cystic fibrosis CF, that a genetic disease that affects the lungs and the digestive system. It's a genetic disease and basically the lungs filled up too much mucus. They produce too much mucus so a bacteria and illnesses can live in there.
Usually you get lung illnesses progressively, it's hard to get rid of them. So you do things like nebulizers, like asthma patients would do to break up that mucus, but just over time it takes over your lungs and you also built up cysts in your lungs. Transplants is needed at some point. When I was four years old I came down with pneumonia, I ended up in the hospital and that's when they diagnosed me.
I had symptoms that I was showing, they tested me and found that I had it. I was a pretty healthy child, I wasn't in the hospital again until I was an adult and then it kind of started. My disease progressed, my lungs get worse. When I was 30 I was listed to receive a double lung transplant. I waited two years on the waiting list and then received my transplant and that was three and a half years ago. So now I'm just trying to maintain my health.

Growing Up With Chronic Illness

I knew I was different from my friends, but again, I didn't grow up with other people who had CF. For me, I was luckily a to be a normal kid. I went to birthday parties, sleepovers and I went to school. I had friends, I don't think I really thought I was too different. I knew I had to do medications and my friends, I don't know, I think it was in a way kind of cool for them. They were like, oh, what's your nebulizer machine? Or what do you do?
Actually that was nice. Nobody picked on me or anything. So it wasn't bad. I think as my disease progressed, it got harder and I kind of wanted that outreach to reach out to other people who lived with my illness to understand it better. I noticed a lot when I graduated college and when I went out to get a job and to work, I didn't really want people to know about my illness. I was worried it would prevent me from getting a job if they knew that I would have to take days off, I would possibly have to be in the hospital at times and I thought it would be a barrier.So when I was a kid, it wasn't something that was very visible unless they saw me take medications or something like that.

Invisible illness and Adulthood

As an adult and my disease progressed, I had a chronic cough and people especially working in an office, oh, are you sick, do you have a cold? I would just say, Oh yeah, allergies or you know, I didn't have anything contagious, but I knew it was pretty obvious that I had something wrong. I would miss days of work and things like that. But then sometimes I think it's easier when people can see it in a way that then they understood.
People tend to understand sickness, like when somebody has a visible cold or the flu, you know, and you, Oh, I'm so sorry. Um, and maybe if they can't see it, they think, oh, you know, you cancel these plans, you're flaky or you don't want to come to work. You're not a good worker. It's kind of that hard place of you want people to understand, but you don't because you don't know how it's going to jeopardize what they think of you or what that means to your professional life.

Reflecting On Receiving News of Needing Transplant

When I was listed for transplant, actually, it was a surprise to me that I needed transplant. You know, living with CFD you kind of know, oh, that could happen. When it did, it just seemed so foreign and I didn't have anybody to talk to who had been through it. I really used Facebook and social media to find other CF patients. Other patients who went through transplant and really seeing other people share their stories.
That's what made me want to share mine because I thought, okay, this person's story made a very big difference to me. If I could do that from one person who maybe was in my position and felt really lost and not sure what they were going to go through coming up and it would be worth it. I was much more open to sharing those experiences because I didn't feel I would have that stigma of thinking.
 I don't want people too close for you to know too much. But now I just share it because just the reason that it meant so much to me that other people shared their stories and it makes it so much less scary. Just to have one person say to you, I know how you feel and know what you're going through, that makes a world of difference.
I remember the day I was told in the doctor's office; obviously they tell you that you're at end stage cystic fibrosis, meaning without any treatment, you probably have a year to live and lung transplant doesn't cure it, but it can extend your life. I remember crying because it's just very overwhelming.  When you think, oh this means you know, I could possibly die very soon. Growing up, pretty healthy. 
I didn't think my life would be to shorten. Then after that, there's about four months of testing and evaluation you have to go through just to see if you qualify. Because, even though you're at end stage, they want you to be as healthy as you can, to go through. Lung transplants are considered the hardest surgery that you can go through physically.
Each transplant center have an average waiting time. For my center  it was four months, but because of my size and the fact that there aren't as many organ donors as we need. I ended up waiting 28 months and my disease progressed through that time as I spent more time in the hospital. 

Managing Fear While Waitlisted

It's scary because you don't, you don't know what the outcome's going to be. I didn't know if I would get a transplant before I passed away. I didn't know how long. You know when you have a scheduled surgery you can think, okay, I just have to make it to this point and with that unknown, like I didn't know. Everything came down just day by day.
I just wanted to make it through and get to that point, so it's overwhelming. I actually was diagnosed with, major depressive disorder and anxiety during that time. I went through talk therapy and took antidepressants because it was like you said; it was just mentally tolling to take it day by day, not being able to make long term plans. To not to see an end to it coming.

Mental Health Post Transplants

I also went through it again after transplant and I felt, I'm not sure how common it is coming out of transplant. I felt really guilty. I felt guilty that I have this transplant and there's so many other people that need transplants. I didn't, you know, you can't guarantee anybody else is going to get a transplant or they're going to be successful.
Through social media I knew people who passed away either waiting for transplants or after they received them they didn't recover well. That's a hard thing to take too. Also looking at, you know, I have a donor, a person who had to pass away so I could have this chance. It's a lot of pressure on you, I want to be the best person that I can. I want to do everything I can now for my donor, for their family, for my family, because my family, my poor parents had to go through that with me as well.

The Role of Support System in the patient journey

I have friends and they actually live in Orlando, their about an hour and a half away and every time I was in the hospital they would come and visit me. My fiancee John, he was there as well.  Every trip to the emergency room, he had to either drive you there, or call the ambulance. My parents actually live in Minnesota and they came down and especially during my recovery, I had to have full time care for about three months after my transplant.
My parents came down and did that. A lot of people sacrificed time from work, time from their social lives. I know mentally it was hard for them as well. But yeah, I wouldn't have gotten through without them helping me. Just not only physically because I couldn't breathe, I couldn't cook. When it came down to it, I needed help washing my hair, things like that. Then just mentally having them keep me up for every day and getting through really made a difference.

Processing Donor's Decision making process

It's overwhelming to know that somebody I've never met and will never meet, literally saved my life. They made a selfless decision and their family did, before they passed away. I can't imagine during the time of losing a loved one making such a big decision. It's been almost four years, that's more holidays, I've had with my family, days I've had with my friends. I've volunteered and I'm just happy to wake up every day. It's a very overwhelming thing. 
I think, I think people need more education, more facts about organ donation. I think there's a lot of false information or stigmas that are around it. People think if you went into a hospital, they want to save your life, if they knew you were at organ donor, which is completely false. They always do everything they possibly can and also that it's something that will come down to your family or your next of kin.
It's important to talk to people around you that want to be an organ donor because in that hard time it could be hard for them to make that decision. If they know your wishes it might be a little easier. It was great during translated really awesome nurses and they worked specifically with transplant patients so they knew the process and they knew how hard it was everyday, you know, just to eat, to get up and walk and all of that.

Clinicians, self advocacy & Patient Experience

I actually had a really great nurses and especially because you don't spend a lot of time with your doctor, you spend more time with your nurses. They're there 24/7. I got to know them and their family stories and they got to know my family that would come to visit. I think that reaching out to the staff, to the health care provider, they were there when your family's not there and I just had really great nurses. I was very lucky. But again, their kind of that bridge between you and your doctor as well. So it's important for them to know everything you're going through and to voice when you have pain.
When you have problems with medications and things like that. Be your own advocate and be outspoken and don't be afraid that anybody's going to judge you or you know. I think I went through that, especially as the kid, I wanted to be the perfect patient, I wanted to come in and you know, I didn't want to complain and that. But, it gets you in more trouble when you don't because then you have problems that you're not taking care of. Don't be afraid to voice anything.

A Day in the Life of Brigette

Very busy, very scheduled. A lot of the treatments that we do. The nebulizers, there's also a thing called a vest machine and it's literally you put on the vest, it hooks up to a machine and it shakes. It does percussions on your chest to also help break up that mucus and those treatments are done two to three times a day and it can take up to an hour each treatment so that along with pills two to three times a day. It's a very laboring process to take care of yourself.  Also, frequent doctor appointments.
There are designated cystic fibrosis centers at certain hospitals and I've been seen at those, I've been seeing just at hospitals and I will say it's very different. The cystic fibrosis centers, they know about treatments, they know how the disease progresses and generally in a hospital it's not something that's seen commonly. It can be hard to be properly treated. The way you would treat infections would be different than with an average person. Sometimes there's a lot of confusion there. It is a very extensive disease, unfortunately. Medications and treatments.

The Cost of Wellness for CF Patients

The machine I was talking about, the vest machine, most families can't afford it. It's thousands of dollars and so things like the Cystic Fibrosis Foundation or you can find other areas that can help you.  Sometimes people donate the machines when they don't need them anymore because they are such a high cost. Medications are expensive, my parents both had to work full time when I was growing up so I could have health insurance. 
When I aged out of their insurance, I had to focus on getting a good job, getting something that I could support myself and get the insurance to pay for those medications. That's hard too because a lot of times when you get to adulthood, your disease is so progressive. It's hard to work full time, but you know, you have to choose what you're going to do. So I worked probably longer than I should have, they told me. 
I needed that insurance, I needed that help. So I'm not sure what the answer is, but, somehow bringing down the cost of drugs  would help, also, the amount of time before a drug can become generic. A lot of the drugs we take when they first come out, obviously they're patented and they're expensive. I think maybe shortening that amount of time and allowing other companies to produce, explaining things. It's kind of a monopoly with very few drug companies that produce the drugs needed.

The Future for A Regenerated Double Lung Transplant Recipient

I would like to tell my story more in person, maybe a volunteering. There are a lifelink Florida's organization that procured my donor lungs, so maybe working with them or somebody,  just to share my story to raise more awareness about organ donation and what that can do. I've been keeping myself healthy and building up that stamina so I can do a little more physically. That's why social media's easier for me a lot of times.
I still have a lot of treatments, a lot of doctor's appointments and things. It's easier for me to get messages out that way. I think it's up to every patient because I know there was a time that I wasn't necessarily ready for everyone to know all those details and it can be very hard. I think if you feel you're ready and you can do it in small steps, even just talking to people in your life, your friends or people you work with and then kind of building up from there.

Social Media & Patient empowerment

I wouldn't tell people yes or no.  I think it beats a person's journey.  But just for me it was very therapeutic, it helped me kind of process everything that was going on. Again, I moved down here from Minnesota with family and friends in other states. It was easy for me to update them on what was going on rather than having to call all of these people. I would just say if you want to do it, don't be afraid to take those first steps.
Even if they're little, take it day by day and know that you're strong and you're going to make it through and don't be so hard on yourself. Don't think you have to do everything yourself. Be okay to ask for help and reach out to people, because it can be isolating as well. Also, you don't want to feel like a burden on somebody else, but you're not. There's people around you for a reason and they want to help you out and take care of you.

Brigette Mckern: Instagram | Facebook

Alisha M Bridges, Psoriasis & Mental Health Advocate

"I asked that elected officials, first find bills that allocate for the N.I.H and C.D.C. for research of chronic illnesses and to look at the bill for step therapy and revaluate and look at your friends and family" Alisha M. Bridges.


Alisha M. Bridges, Psoriasis & Mental Health Advocate

Psoriasis is an autoimmune disease, basically people living on with the condition have an overactive immune system which causes us to create skin cells that we don't need. Now in a normal body that does not have psoriasis the skin cells are created, replaced and die within 28 days. For someone who has psoriasis that cycle is happening within 3 days and the body cannot keep up with that passes in order to properly flake off the dead skin cells.
So with that happening the dead skin cells start to build on top of good skin. If you have psoriasis a lot of characteristics of it will be dry, inflamed patchy skin. It can be painful, it can be very itchy and it can be had a debilitating disease. It’s also associated with arthritis which is another autoimmune disease that is basically your body attacking itself within the joints. A lot of people have a misconception that psoriasis is a skin disease, but given the explanation I just gave as to how it works in your immune system you can see that it's much more than that.
I was diagnosed when I was seven years ago. It came after a case of chickenpox and I had always had plaques of dry skin on my knees and elbows, but at that time we just thought that I was just really ashy. We did not know that I was going to have to face my autoimmune disease a couple years later. After the chicken pox came which was very common when I was growing up in the late 80's early 90’s my grandmother noticed that my skin was not healing like it normally should after someone encounters the chickenpox virus.  So she took me to the dermatologist, they surveyed my skin and based on the look of my condition as well as family history of psoriasis they then been determined that that is what I had. 

Growing Up With Psoriasis  

Growing up with psoriasis as an African-American definitely has some unique challenges. My psoriasis does not look like what is in the textbook and described in the textbook as characteristics of psoriasis. So usually people will say “Well psoriasis is red inflamed patches”. Well for a person of color my plaques were not red, they were brown to a purple color.
So in one instance I've definitely faced some challenges just from a health and medical standpoint, because sometimes doctors didn't even really know if what I had was in fact psoriasis because they weren't well versed in dealing with people of color who had the disease. So that meant a lot of times a lot of misdiagnoses. I’ve been diagnosed with funguses of the skin other conditions of the skin. It was a lot of trial and error as far as different medicines that they would use just to see if something would work.
Based on the medicines that did work sometimes it was determined that I had psoriasis. Now outside of that as far as like quality of life and just interacting with other people it has definitely been a challenge. People have added more misconception when it comes to visible diseases. They automatically think you know you're contagious or I'm going to catch it or something is wrong with you. So that in itself is challenging just as a child living with a visible disease. It was then became my responsibility as a seven year old to have to explain to my peers as well as adults what I was dealing with and that's a lot to put on an adolescence.

Self Esteem  & Living With Psoriasis

It also affected my self-esteem and the want and inability to do things comfortably. And it just has affected my whole entire life. There was not a day where psoriasis did not play a role somehow in my life. It was hard for me to deal with the stress of stigma that came with psoriasis. I internalized a lot of pain and challenges that I faced. I didn’t think that those around me would understand what I was dealing with mental emotionally, not even trusted family or friends.

I kept a lot inside of what I was going through. And often times being in an adolescence I really didn't even know how to properly express those feelings, to articulate in a good way it's of people to tell them how I was truly feeling. You know you don't have many options growing know with psoriasis as a child. There’s not a lot of medical options, there's not a lot of medicines, because they don't want to try harmful substances on kids. So I really suffered emotionally and mentally and sometimes I feel that those components were way more difficult to deal with than the actual physical effects of the condition.

Retrospective Thinking;  Improving Your Overall Health

If I could go back to my younger self who was afflicted with psoriasis, I would definitely say “Don't give up”. I would say that “There is definitely a light at the end of the tunnel” and I will also tell her “To allow herself to be used where it hurts”. I feel like a lot of times difficult challenges in our lives or hurtful challenges in our lives are the things that give us purpose. I would definitely tell her “Do not give up. Allow psoriasis to give you purpose, to give you passion and to inspire others”.
I will also tell her that “There will be people who love and accept her despite her disease and that people will embrace her and people will be inspired by her story”. So just keep pushing experience, because a lot of what I've been through, a lot of the stories that I have and testimonies to give to people only came because I allow myself to experience life. Although some of those experiences were difficult, they were uncomfortable, it’s all for a greater good and a greater purpose. 

Blogging & Psoriasis

For years I hid the fact that I had psoriasis, one of which I was embarrassed, I felt alone and I felt as though people were not understand. About eight or seven years ago I just had this epiphany and I ended writing a blog post on a psoriasis support group entitled My Suicide Letter. And so the My Suicide Letter was not about a physical death, it was not about taking my own life, but it was about killing those parts of me that were insecure, that had fear, that had shame that just was embarrassed due to my disease. To kill those parts of myself so that I could truly live.
It really was nothing planned out, it was just something that I wrote in the spirit of the moment and decided to share in the psoriasis support group, because I felt like other people there could understand and could relate to those feelings that I gave within the letter. Well it almost went I guess viral on the psoriasis community and got passed along and so many people were inspired. The National Psoriasis Foundation reached out to me and invited me to their conference that was taking place that next year. I went there for the first time in my life I've seen people who have psoriasis.
I still don't really see people of color, but I finally met others who were living with this disease. Even an elementary teacher that I had seen at school when I was younger, he has psoriasis and he was at that conference.  We passed each other every day and did not realize that we both were battling the same disease because many of us live with psoriasis do so in secret. So during that conference they had a workshop about blogging and getting your story out to writing.
At that time I thought to myself “Well that's something I am comfortable with and that I can do, because I can write, share my feelings, shut the computer and go on about my day”. I don't have to be overwhelmed with like negative comments that she might feel in person and you know if I'm not comfortable with something I can just delete the post then move on about my day. So it started off as kind of like a safety net, writing behind a computer and just post on my feelings online anonymously. And then it grew into something much bigger and it really gave me the power to not only tell my story online but to tell it to anybody who I feel like needs to hear.

Patient Activism

My life and decision to become a patient advocate for psoriasis as well as mental health has given me purposes and passion and I feel like at this point in my life I'm exactly where I need to be. Every morning and I get up and do this where whether is at a conference or speaking in or message and someone online or blogging. I feel like this is where I am supposed to be, like this is where I’m most comfortable, where I’m most happy, where I find the most joy. It also has empower me to take even more consideration of my health and advocate for myself when it comes to medical professionals and doctors. I know what medicines are currently out, I know the side effects of those medicines. I have a voice in the decision of treatment options for myself. I understand the risks and I'm able to speak up for myself when I'm speaking to doctors and nurses, which a lot of people are afraid to do. Being a patient advocate definitely empowers me to just care for myself as well as others, because I know on the large spectrum of things that this will help all patients, not only ones just psoriasis but living with any type of chronic illness. The first step is to have patient advocates be the voice for the people who are kind of afraid to speak out for themselves.

Discrimination & Psoriasis

We live in a society that is very driven by physical appearance, so I having a visible disease like psoriasis definitely brings about a lot of discrimination and bullying even among grownups, it's not just kids. I have been made fun of by my peers when I was younger and I have even been made fun of by grownups on the job. When you have a visible disease it really makes you a target, and it make you an easy target because it's something that people can see and can talk about. Like if you have something like let’s say diabetes where if you don't tell anybody they absolutely don't know that you're dealing with that. Since psoriasis can be seen it causes people to isolate.
I have lots of friends who have been discriminated against at pools, they have been asked to leave and ask to bring documentation proving that what they had was not contagious. I was discriminated against at work one day a guy came up to me and told me that I was a very pretty girl but I had ugly skin and that is literally the words that he said to me.
I even remember being a college student and having to share a bathroom with my suite mates and the embarrassment of my skin flaking and no matter how much you tried to clean up behind yourself, you always left a party behind when you're living with psoriasis. That causes people to isolate, causes them to be by themselves because it's easier just to keep to yourself, compared to having to always explain what is going on with your health. And it's easier to be by yourself because you don't risk being discriminated against, teased and really just hurt emotionally by those around you.

Combating Isolation Through Patient Advocacy

There are a variety of ways that patients can advocate for themselves as well as others. From one I feel it's very important to connect with the National Psoriasis Foundation because they have an array of resources that you can use that you probably wouldn’t even know existed if it wasn't for the N.P.F. They have a one to one mentor which allows you to connect with other people.
They also have programs which allow you to reach out to your congressmen and your state if you want to advocate against step therapy or if you want certain funding to go towards research for psoriasis. That's kind of on a large scale. Another point is to get involved in support groups. We isolate a lot when we have this condition and when you isolate you’re energy of like wanting to do stuff for yourself decreases. But if you have a network around you like others with psoriasis, even if it's just online, you will start to feel empowered.
I started to feel empowered when I realized I wasn't alone and I was not by myself and I had a network of people that could help me along even when I didn't feel good emotionally or physically. Support groups are really important and they will kind of keep you aware of the latest trends that's happening in the psoriasis community.  I will also say being honest with your medical professionals. Keeping track of everything that you you have going on, how you feel, treatments that you're willing to take and treatments that you are not willing to take.
That when you get in that doctors office there is no deliberating. This is what I want to do, this is what I'm willing to do, and this is what I'm not going to do. Speak up for yourself when you go to a doctor's office it is not a dictatorship, it's a relationship. That’s like what I like to say. It’s just like you’re looking for a spouse. You tell your spouse your needs they tell you their needs and you work together to accomplish a common goal. That is the same process that it should be when you are choosing a doctor for you.

Social Media & Patient Advocacy

There are lots of ways to advocate for oneself. There are a lot of pros and cons to social media. On one hand I'm thankful for social media and the internet because without it you wouldn't that be here today. I found my voice using online platforms such as Twitter, Facebook, blogs and Instagram. It allows you to connect with other patients to see that you're not alone and it just allows you to really express yourself. On the other hand social media can be very depressing. I talk to my therapists about this all the time.

That's how I feel  although and I'm sure studies already show that there is probably an increase of depression and anxiety due to the increase of social media. For one you're bombarded constantly with the opinions of others, opinions that a lot of times people want to even have the courage to say in person but because it's an online platform they feel like they'll never ever meet you or they can hide behind a totally fake profile. They feel that they can say whatever they want no matter how insensitive it is. It also gives you kind of a false glimpse of what's really going on in a person's life.

Typically people are only going to put when there have been success online, nobody's like oh---some people you know will cry wolf and say that they're having a horrible day. But a lot of people who post you know list their relationship is like “Me and my wife or me and my husband we’re just having an amazing time and I just look so happy” and you're wondering why you can't I have that. But behind the scenes they're going through just all kinds of mess. So on one spectrum social media is great especially for Patient Advocates, on the other spectrum social media can be very overwhelming and you really have to kind of balance out how you use it in create boundaries and do what's comfortable for you.

Building A Support System

For adults living with psoriasis there are a few ways that you can build a support system. First start with your friends and family. The friends the family I would like to say are your backbone. I live with psoriasis for so long and I was afraid to tell those around me how I was truly feeling, but when I got older and got more into my advocacy I realized I missed out on the opportunity to really be supported and empowered by those around me. Your family your friends can't empower you if they don't know that something is wrong. 
If they don't know what you're feeling, if they don't know what's going on in your life. I would say start with you with your friends and family so that they can get the tools in order to help you be successful physically, mentally and emotionally. That's first. The other thing that I would like to encourage those to do is again find a support group, whether it's online or in person. There are a lot of platforms to which will allow you to share your deepest, darkest and most intimate secrets of living with this is the that you may be afraid to share with family and friends.
Other people with psoriasis won't judge you and we 100% get it. So I think that's very important in being an adult with psoriasis. Thirdly I would like to say treat your disease, whether it's holistically or whether it's with prescription medications, but don't go without treatment. When you go without treatment you increase your risk for of the diseases like heart disease, diabetes, diseases of the eye and definitely mental health issues.
That’s number one depression. So make sure you are actively attempting to treat your condition. If you're worried about concerns of price, talk to your doctor, there are many patient resources out there that will help you to get the treatment that you need. And try holistic approach, if you don't want to do medicines. Now usually those take a lot longer to work, but your life in your health depends on it.
Please do something. I would just say don't give up. You know something doesn't work, if someone's not receptive to your story, to your struggle, keep it moving because there's something that will work and there's something----there’s someone who will embrace you. So that’s the advice that I would give for adults living with psoriasis.

The Role Of Elected Officials In Funding & Resource Allocation for Psoriasis

Elected officials can help with the progression of treatments and cures for psoriasis and by making sure that they allocate funding to the NIH and CDC. When they're doing different research initiatives in order to figure out the cause of these chronic illnesses. Even if it's one particular chronic illness, like psoriasis, a lot of times when they reach discovery with our condition at least two discoveries and realizations for other conditions.
I would also like to say reevaluate the terms and conditions of step therapy. Step therapy is basically where patients are required to use cheaper treatments before they are allowed to use the more expensive ones and a lot of times that can be hard on the patient. They’re putting in their body medicines that aren't going to work for them, they're increasing their risk of symptoms and side effects and they're also wasting a lot of money and a lot of time.
 I asked that elected officials, first find bills that allocate for the NIH and C.D.C. for research of chronic illnesses and to look at the bill for step therapy and revaluate and look at your friends and family. How would you feel if it was your son, your daughter, your wife, your husband, as they were in the predicament because honestly they could be in the predicament, because chronic illnesses like psoriasis can come at any point in one's life.

Plea To Change Societal Perceptions of those Living with Psoriasis

Psoriasis is a condition that one cannot help. We do not choose to have this disease or this condition. It is not contagious. It is not something you can catch by touching someone, by having sex with them, it is an auto immune disease, which means that something within our immune system has gone haywire. I would like to encourage people to provide compassion and empathy for those that they see who are different from them.
It just does not have to be psoriasis, because of this condition any time I see someone struggling with something I'm able to empathize. I would like to also pass along the message that any chronic illness can happen to anyone at any given time. You could be perfectly healthy right now in your life and tomorrow be diagnosed with the disease that you now have to live with for the rest of your life. So, please consider how you treat others, what you say and how that may make them feel and consider that it could be you one day or someone close to you that you love.
I’m Alicia Bridges and I am a psoriasis and mental health advocate. You can find me on www.beingmeinmyownskin.com or any social media network @AliciaMBridges. That’s for Twitter, Instagram, Facebook or YouTube. My purpose in life is to be the voice for the voiceless to inspire others with my story in hopes that I create empathy and compassion among those who are the least understood.