Revisiting the Ethos of Health Care | BJ Miller, MD

We have to remind ourselves that healthcare exists on behalf of humanity, on behalf of quality of life for everybody, that is its core genius and joy. For those of us working in it becomes morally distressing to be separate from that mission.


About BJ Miller, MD

Informed by his own experiences as a patient, Dr. BJ Miller powerfully advocates for the roles of our senses, community and presence in designing a better ending. His interests are in working across disciplines to affect broad-based culture change, cultivating a civic model for aging and dying and furthering the message that suffering and dying are fundamental and intrinsic aspects of life.  

He invites us to think about and discuss the end of our lives through the lens of a mindful, human-centered model of care, one that embraces dying not as a medical event but rather as a universally shared life experience. Dr. Miller is a longtime hospice & palliative care physician and educator. He’s been on faculty at his alma mater, UCSF, since 2007 where he’s worked in all settings of care: hospital, clinic, residential facility, and home. He now sees patients and families at the UCSF Helen Diller Family Comprehensive Cancer Center.

Dr. Miller’s Story

I'm a palliative care physician from San Francisco. My clinical work is at the University of California San Francisco, where I practice and teach. But most of my work these days is being out in the world on the speaking circuit trying to sort of beat the drum around helping everyone deal with illness and trying to prepare for end-of-life issues. That's the bulk of my work and then the third piece right now is working on a book call A Beginner's Guide To The End. It will be out next July.

I was injured in college and that made me a patient for an extended period, for months and I came close to death myself. What really turned me on to issues around health care and caregiving in general was becoming disabled myself. That turned me on to two things, the power of our mortality and the finiteness of our time on this earth. Also, it turned me on to the healthcare system both its splendors and its ills. So that kind of prompted me to pursue this line of work, those two things together.

Americans With Disability Act: Built & Lived Environments

I think especially as a disabled person, the biggest thing I became  aware of is how the built environment is not really made for you. This was 1990---‘91 when I was injured. That's right at the time of the passage of the Americans with Disabilities Act. It was just becoming law that we had to guarantee access for people using wheelchairs etc. That’s not that long ago. If you look around you'll see a world that really kind of carves out-- it's built for people who are able-bodied, but those of us who have disabilities, it becomes much more challenging. It’s just becoming aware and my eyes being turned on to how we create a world that accidentally or otherwise leaves a lot of people out. That has been a driving force for me.

Complexities of the Human Experience

I think life is hard. I think for any human being life is hard, it's just we are born with these imaginations that allow us to imagine a world better than the one we've got, and so a lot of us always found ourselves either disappointed in life or disappointed in our response to life. I guess one thing to get across is disabled or not I think life is just difficult and I think we'd all be better off if we just cop to that, if we just gave ourselves that credit and gave each other a sort of a benefit of the doubt that no matter how big the smile on our face. No matter how able-bodied or well we look, that we may be having all sorts of struggles internally and that suffering is a universal experience you don't have to be an amputee to have suffered etc.

Societal Impact on the Human Experience & Healthcare

I think part of the social queue here is for all of us to wake up and see the other inside of ourselves, and see the relationship between us and others. If we could all do that, I think we would be living in a much kinder place. I think we'd be living in a much kinder world, a world without shame. I think one of the hardest things I witness in myself and others, particularly my patients is not only do we have to deal with illness or disability and the pains that go with that, but we have to deal with the shame that goes on top of that. That shame comes from cues that people send us, that of charity or pity or otherzing us.

If you spend a few moments in these shoes, you start realizing that not only is that unfair to receive that kind of vibe, that shame from people, but it also rises a sort of indignant in each of us, on myself. Because it's not like any of us has just got it all down and we're all clear, everything's good and everything's hunky-dory, none of us if we're really honest that state doesn't exist. So, it's not like the world is easy if you're able-bodied and horribly hard if you're disabled, it's just hard no matter what.

These are variations on themes, I don't care if you have four limbs or six limbs I don't care, it's just difficult. It's a really important cue and I do think it starts with of us seeing ourselves as others, seeing the parts of ourselves that are alienated from the world etc. How we accidentally divide ourselves from each other, how we accidentally alienate each other. To me it feels like the evolution of humankind, for us to see this unity among ourselves and so that there really no need for even the word other.

The Evolution of Health Care

Health care needs to radically shift, we keep putting band-aids on the system but I think the system is flawed at its core. Basically, the Department of Health and Human Services should back up and rewrite a mission statement. Being apart of the healthcare industry myself, I'm not even sure what this is all for. We've become self-serving, we invent gizmos that may or may not help people, but we just find a way to pay for them and develop them. We're just loaded up with all sorts of gear and gizmos that end up becoming other forces to get in the way of us being humans dealing with life.  We have to be reminded that healthcare with all its gizmos and its wizardry, I mean there's nothing wrong with its wizardry, it's just misplaced. We have to remind ourselves that healthcare exists on behalf of humanity, on behalf of quality of life for everybody, but that is its core genius and joy. For those of us working in it becomes morally distressing to be separate from that mission. That's sort of an overarching thing.

We have to revisit the ethos of health care not just the machinery of it, that whole ethos of care. Beyond that I think we have the sort of cultural issue, where as you point there's this vertical orientation doctor up here, patient down here, or doctor up here nurse, social worker, chaplain, there's this pecking order, that's just insane and it doesn't really work. That's where we end up with these conjuring craggily old doctors all burned out because too much is expected of them. Those working underneath them were burned out because they're treated like hell. With all of that I think the source of that moral distress that I see is principally because somehow in the culture of healthcare, we are not invited to own our own otherness, our own disability.

Back to this sort of central shift that I think you and I long for in society. Every doctor I've ever met has been sick, every doctor I've ever met is going to die, every doctor I've ever met has lost someone they love but those experiences aren't welcome in their work. We need to open that pathway where physicians and clinicians get to bring their own experiences as human beings to the mix. Not the current status as you basically are taught to ignore those things if I want to be a good doctor I'm supposed to stay up all night for nights on end I'm supposed to not have a personal life etc. That does not work, that does not work at all.That turns us into mindless machines and it makes patients feel awful for needing them. I guess I keep pointing back to however the machine of healthcare needs to change, I think it will flow nicely if we recraft the ethos and the mission of the work in the first place.

I guess that's my last wish Kistein, the work is inherently so gorgeous. I mean you have all these people going through so much trouble to learn so much on behalf of helping each other, so the potential for health care or the root of health care is one of the most gorgeous things. It's right next to sort of spiritual care,  pastoral care or something godly something beautiful, humans helping humans. At its root it has the potential to be the envy of any industry in the world but we are so far from that potential. My final word is, let's remember this potential and work towards that.


Recapping #PESummit | Empathy + Innovation

"Empathy is something that's essential to us being human beings. The idea to look at our fellow men and women and see pain, happiness or suffering and feel that your self" Evan Peskin, Resident Physician, Conference Attendee.

 

Cleveland Clinic Patient Experience Summit 2018

Empathy + Innovation

EMPATHY

WHERE } YOU } ARE

A two day conference held during June 18-20 in Cleveland, OH

In attendance were stakeholders at all levels across the healthcare space including patients, clinicians, and decision makers. To gain perspectives on empathy through different lenses I spoke with the Cleveland Clinic staff, healthcare leaders, decision makers, and healthcare enthusiasts in regards to defining patient experience #PtExp. As well as predictions and future outlook for technology and humanism in healthcare.

Jessica Crow, MBA Program Manager IV, Center for Excellence in Healthcare Communication

Incorporating Patient Centrism  at the Center for Excellence in Healthcare Communications at the Cleveland Clinic

We focus on communication, empathy and just seeing people as people. Having real conversations, getting to know who they are, understanding their needs, what’s important to them, their families, their backgrounds. So that you can truly figure out how to care for the entire person.

Barriers Hindering Excellent in Patient Experience

Time! Time, is always an issue within communication and medicine. Whatever we do, the feedback we always hear is “well I don't have any time. I don't have time for that. I have to see more patients, or I don't have time to go to a class etc.”. I think that if we were to use some of the skills that we try to have people focus on, it actually saves you time. Time is always a barrier. Productivity; there's always an ask to do more and more with less and less, faster. We’re constantly trying to compete with that. What gets lost at times is that connection, seeing people as people, it then gets very robotic, monotonous, emotionless and cold.

Empathy

When I hear it, what I think of is, somebody hearing me, somebody understanding what I’m going through, somebody almost feeling what I’m feeling and being able to recognize that for me. Not about themselves, not about anything else, but really thinking about what I'm going through at that time and how that must feel. When you get that genuine response in that moment, and feel like their actually listening to me, they actually understand how I’m feeling and that they care.

 

Joaquin Dos Reis, Program Manager, Global Education, Cleveland Clinic

Caring the Cleveland Clinic Way

I care about education, sharing information, I care about others, I care about our patients, our colleagues, caregivers, staff, everyone!

Empathy at the Global Education Department.

Empathy means everything. If you are a Cleveland Clinic caregiver, from the first time you park your car, you are in the Cleveland Clinic, you are a Cleveland Clinic caregiver. Part of that is that we have the opportunity to work with patients and work with colleagues and physicians from all over the world. We connect the dots, we bring international physicians to the Cleveland Clinic to meet our physicians and leaders.

 

Julie Rish, Ph.D., A Clinical Psychologist, Director of Design and Best Practice in the Office of Patient Experience | Director of Communication Skills Training and an Assistant Professor of Medicine at the Cleveland Clinic

Humanism in Medicine

I think that medicine is inherently human. The art of medicine without relationships--- We're not just technicians. Similarly, providing excellent patient experience is about meeting people in a very relational human way. Optimal healing can’t occur without the humanity of medicine and true understanding of another person sitting in front of you, without being able to empathize with your experience. Relationships are healing in and of themselves. When we're connecting as people it's healing to me as a clinician but it's also healing to the person that's sitting in front of me.

Barriers in Healthcare Delivery

There’s a lot of barriers that equal time and task pressure. How can I be present in this moment and not be thinking, three steps ahead or three steps behind but just to be present in the moment? When you do that you can find meaning and purpose in your work. The barrier is how do we overcome those obstacles to create moments of presence, being mindful and truly connecting a human level? In doing so, that's where we can find restoration and purpose and get back to why you chose this profession, this career, this entity in the first place.

Watch/Read The Entire Discussion

 

Richard I. Levin, MD, FACP, FACC, FAHA, President and CEO of the Arnold P. Gold Foundation, a position he’s held since 2012.

Thoughts on Technology & Healthcare

Technological wonders need now to be incorporated as physicians had done for these two millennia into a system of practice and care that shares the responsibility for the care to the extent possible with the patient and the family. I think it's not so far away, it's not so difficult for us to figure out how to do that as long as this is an accepted goal of the entire system with each health system contributing to it to the best that they can.

Read/Watch The Entire Discussion

 

Michael Joseph, PMP is a chronic illness patient from Northern Virginia, currently the founder and C.E.O. of Prime Dimensions and Executive Director of Empathy. Health.

What I can do overall to contribute to the patient journey, patient’s experiences is that's the impetus for empathy.health, part of that was influenced by what's going on here at the conference, Patient Experience Conference with Dr Adrienne Boissy, MD, MA who has been preaching this for quite some time long before empathy.Health came along.

Curating content from that site into ours would be great. In addition to other industry leaders and folks on Twitter that have really contributed dialogue as well. There’s Empathy Princess on Twitter, Merriman. There’s so many people on Twitter even today, the whole #pinksocks movement and tweet chats (#HCLDR) about this. It's a great platform for people to voice their opinions, their frustrations and best practices. Maybe, we can grab some of that and put that collectively on Empathy.Health as a resource.

Watch/Read the Entire Discussion

 

David Watson, MD. A physician surveyor for The Joint Commission

Healthcare Workers & Empathy

I think the empathy for me and the important part of this conference (#PESummit) is what I talked about earlier, thats second victim. These are healthcare workers that are involved in an adverse event. The empathy that needs to be expressed to them is that connection of realizing that they've been in a difficult situation and they need to be supported.

They need to be reassured and they need to know that they went into medicine for the right reasons. They take care of patients because they love what they do and they should continue to have that fire in their eye when they go to work every day to be totally engaged. We know that total engagement leads to less errors so we want our workforce to be engaged.

Watch/Read The Entire Discussion

 

Jason A Wolf, Ph.D. CPXP. Dr. Wolf is the President of The Beryl Institute

Patient Experience & Empathy

We did a research on empathy, compassion, all these kind of things. We asked consumers, to what extent empathy and compassion was important to them. I was actually surprise, it came down the list. I think it's because, empathy is a healthcare centric language. A typical patient and family member out there knows what they want to see. They want to feel listened to, they want to feel like they are being spoken to in a way they understand etc. Those were the things they elevated in terms of importance. For me the lens is not to get stuck in what empathy is but to think about what does it look like in action.

I’m probably less concerned about how we define empathy. How we elevate empathy and the actions that we take to ensure that patients, family members and those that are delivering care feel heard, are communicated to effectively, are engaged in ways that matters to them, then they feel what we believe empathy is. All of those things without having to put a label on it in a way that is about us doing something but more so about engaging the folks in care themselves.

Watch/Read The Entire Discussion

 

Claire Pfarr, Marketing Manager, Oneview

Thoughts on Patient Experience

Patient experience is one of those things I have found where no matter who you are, what walk of life you come from, when you’re speaking to people they all have a patient story. Everybody have a patient story. Whether they were a patient, or whether they were caring for a patient, everybody has healthcare experience that most often that's most often not necessarily a good one. I think that is very telling, but I think that healthcare has the opportunity to really take care of these people and to turn a negative situation into a very positive one.

 

Evan Peskin, Resident Physician | #PESummit Attendee

Thoughts on Empathy in Healthcare

Empathy is something that's essential to us being human beings. The idea to look at our fellow men and women and see pain, happiness or suffering and feel that your self. To be able to truly feel what someone else is going through. It's different from sympathy, it's not just feeling bad for someone else for what their going through. Empathy is truly experiencing or attempting to experience what the other person is going through.

Improving the Patient Experience

We improve the patient experience (as much as it's a cliche) by recognizing that everyone is a patient at one time or another. Even if you’re not the patient sitting in the hospital bed, you’re the family member standing next to your love one there. You improve the patient experience by taking the physician off the pedestal. Physicians should not be autonomous decision makers anymore without any input from patients and family members.

 

Kelsey Crowe, Ph.D | Founder of Help Each Other Out

Dr. Crowe, a plenary speaker at the #PESummit used real life examples of empathy in healthcare that were collected at the Help Each Other Out Empathy Bootcamp  

Empathy Examples

  • It really made a difference when my nurse: stood by my side and made physical contact with me during my biopsy. It was so comforting and reduced my anxiety. Thank you!

  • A UCSF staff person (receptionist, security guard, health aid) made me feel better when: let me lie down on the couch to rest and even dimmed the lights for me.

  • Something my doctor did or said that really comforted me: Gave me a hug.

Dr. Crowe then stated These are often recalled years later.

  • The receptionist/scheduler has been so helpful when: She moved another appointment by 10 minutes so that I could have my very first appointment after diagnosis with the surgeon, without having to wait 3 weeks.

"I can't tell you how often people describe this kind of behavior by schedulers and receptionist" Kelsey Crowe, Ph.D

Read/Watch More on Empathy & Healthcare

 

Social Media Activities & #PESummit 

During the summit Colin Hung posed a crucial question, challenging the glory of patient experience to the #HCLDR tweet-chat community “Have We Reached Peak Patient Experience?”. Read more on Hubberts Peak Theory, Colin's rationale and thoughts on patient experience via the  Healthcare Leadership Blog


For More On The Cleveland Clinic Patient Experience Summit 2018 Check-out

#PESummit | Website

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.