"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.
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 SystemFor 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 PsoriasisElected 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.