Mental Health & Stigma Conversations with Patient Advocates Gabe Howard & Rie Lopez

May is Mental Health Awareness Month. Did you know that 43.8 million adults experience mental illness in a given year (NIMH .org)? In an effort to amplify the voices of those living with or experiencing mental health or behavioral health issues, here are a few video discussions aiming to bring awareness to stigma and its effect on wellbeing.



GABE HOWARD is an award-winning writer and speaker who lives with bipolar and anxiety disorders. In 2003, he was formally diagnosed with bipolar and anxiety disorders after being committed to a psychiatric hospital.

“Its weird that in this country we separate out mental health and physical health because mental health is your brain. what’s more physical than your brain?



Rie Lopez, MPH A ‘Professional Patient’, Rie is a health educator, skilled public speaker and writer, and serves as a patient advocate for mental health, chronic pain conditions, and clinical trials.  Rie is also actively using her voice on social media

“ From a societal level trying to embrace that mental health is as important to our physical health. A lot of it comes down to making sure that people understand that they are as important”.  

Gabe and Rie are members of the Society for Participatory Medicine. Recorded at 2018 Connected Health Conference.

The Complex Dynamic of Cancer Diagnosis at Early Adulthood | Toby Peach

I found for a long time I didn't want to have that conversation. I didn't want to talk about it because I was afraid of what people would think of me and also I didn't want people to feel sympathy. I didn't want them to feel bad and so for a long time, I would say it was okay. It was fine let's just move on let's not talk about anything cancer.


Toby Peach,  Theatre Maker, Cancer Survivor & Patient Advocate from the UK.

Toby’s Story

I'm here today because I was talking and presenting a theatre show that I made about my experience of having Hodgkin's lymphoma when I was 20 and then again when I was 22. I made this show because I was interested in the fact I didn't understand what cancer was and I wanted to understand what it was and the more and more I looked into it the more and more I realized that this world that I'd kind of experienced was so foreign to me in a way. I felt that I needed to know what it was about and more importantly about how I was fortunate enough to come through it. So, I made a theater show which was trying to talk about hope and I think that's one of the hardest words to talk about in the world of cancer.

Reacting to the News of Cancer Diagnosis

In all honesty it was just completely shock and the fact that my reaction was that the thing where I lose my hair kind of showcases the fact that I was worried about something which is so mundane. Your appearance when you're facing something like cancer is really not that important, it's something that obviously that's the kind of the reaction. I'd made the mistake going to the hospital on my own and I’d driven myself as well which was stupid, because I just wasn't able to cope. I had this moment of shock, then I was in floods of tears and then I had to call my mom to tell her that it was cancer, but it was going to be okay because it was Hodgkin and Hodgkin's is the most curable of the blood cancers.

She always reminds me that I would tell her there's good news and bad news, bad news is it's cancer the good news is, it's caught early and it's really it's the best one you can get, they keep telling me which is a strange thing to tell people. She'd come and she had to get a neighbor to drive her over so that she could come and drive my car back. It was a bizarre moment and it's one of those things where I look back on it now and there was a nurse he was present and I speak to her like I have done quite a bit since and I know that is something that changes your world entirely. And it can never go back to what it was, and you have to accept it.

Cancer at the Intersection of Early Adulthood & Autonomy

I fell into a strange gap, I think which was that I was just hitting 20 and I was at university and I'm at that age where I'm starting to be independent and I'm starting to be able to stand on my own two feet. I think when I was diagnosed I still desperately wanted to keep that. My family were incredible, they were kind of the support network around me and my partner as well. I think what happened was that actually, I had the option to get in this gap between the youngsters and the adults and I didn't really want to be a teenager, I was older than that and I also didn't want to be---- I wanted to be seen as an adult. I  don't think it was right for me like I probably could have got more from the fact that in the UK we have Teenage Cancer Trust. They have units in hospitals and I could have gone to one of those units and been around and have a bit more relaxed kind of atmosphere I’m sure. I didn't push for that, because actually in my mindset, I just wanted to get it done and I think the less interaction I could have with other people the better.

A day in the Life of Cancer as a Young Adult

I was going to the hospital once every fortnight for the first time of having cancer I would go and have my appointment in the afternoon. I would drive back from my University have my appointment, get the chemo in the morning, rest up Friday Saturday. Drive back Sunday to my University and go back to school and be at University Monday yet for another two weeks. For me actually the thing was, I want this little impact on my life but cancer turned out to be this thing that was taking away my education as well as like my friends my partner.

The Importance of a Support System while Fighting Cancer

I was so fortunate that people around me allowed me to do that my age, I was at drama & acting school, and my teachers were brilliant, they allowed me to have that Friday off and as long as I look after myself and say I have picc-lines in as well as other kind of tubes and stuff. They were brilliant because they knew that, that was what I needed. The second time when I relapsed I had to be an inpatient but because it's a strange thing of being an inpatient. I was in (what felt) like confinement for six days. That was repeated how many times, I can’t remember how many cycles you have of that but because I was in confinement again, I didn't want to see anybody else like my friends would come in and maybe its because the option wasn't there for me and I wasn't able to have that interaction. Again I was try my best to have as little impact on my life and I think because I had in my mindset because it was Hodgkin's and because of the fact that this treatment they were very positive that they caught it early the second time. I just wanted to get it done and I didn't want to talk about it ex. just asked me about the hospital food ask me about that that's fine.

Normalizing Difficult Conversations

I found for a long time I didn't want to have that conversation. I didn't want to talk about it because I was afraid of what people would think of me and also I didn't want people to feel sympathy. I didn't want them to feel bad and so for a long time, I would say it was okay. It was fine let's just move on let's not talk about anything cancer. I think that's also the way that society kind of used cancer because we're very scared about it and very scared about what it can do. because We're afraid to talk about death, we're afraid to talk about disease and I guess health care comes into that as well. I just think it's about having conversations, allowing people to know what people can experience and how they can face it.

Outlook on Life Post Cancer

I guess for me, one of the biggest takeaways is the fact that I'm mortal and I think embracing the times when I have a bad day or maybe somebody else is having a bad day and trying to embrace the kind of feeling of knowing. I know that this moment can be bad and actually to us but time passes and that when it's like it's so often it's not a full stop in our lives. I feel very fortunate enough that I've come through my treatment and I'm able to be outside, that's what a big thing for me is. I remember the confinement was a big and not confinement but also when not just being locked in a room, but when you actually can't leave somewhere.

Maybe because you've got tube in or you're tired and for me that's one of the big things is, it's about being grateful for that, being grateful for being able to leave my room. Being able to walk down the corridor without getting out of breath and I'm a runner and so there's this thing about being grateful for that. Being able to do things that are perhaps not like I do like to go and do some traveling and things like that but sometimes it's just about this the small things and knowing that I can walk out like I did this morning. I can come to America and be here for a couple of weeks, I think that's the thing for me. Looking at those moments that like I perhaps might have taken for granted.

Advice to Patients: Coping with the Emotional Side of Cancer

I think it's the acknowledgement that it's okay to not be okay, and that's really important to acknowledge because there is a kind of an expectation that we just carry on and that we just keep going, when we face a trauma. There's some shame in looking at that experience and understanding it and taking it on in a way. For me, there were times when I wasn't okay but I blocked that out and I tried to pretend that I was okay and I'd say, I'm fine, I'm okay, I'm fine. That was me just protecting myself, protecting others and actually what I needed to acknowledge.

I definitely think there's a bit of a masculinity thing in there of being yes I’m a man. I don't need to talk about my feelings, but which was just to acknowledge that I wasn't okay and I was finding it hard to cope with the emotional side to having treatment. We can sometimes believe the post treatment and say you've gone through the hardest part which is having the chemotherapy or whatever treatment you've had. For me, post treatment was actually was harder, it was harder for me to understand because I wasn't able to contemplate the things that were left. The side effects of a treatment, etc. If we can acknowledge that side of it as well we can acknowledge the people and mental side of their health as much as their physical is so important. That there are times you'll feel bad, there are times when you won't feel great and that's okay. To try and focus on those moments, it's not the full stop as well. There  are times when it will change as much as you were before that there is a change that things will change and believing in that chance of change is really important.

Maximizing Impact Through Patient Advocacy

I think I'm interested in ways that we can make the patient of today and of the future more comfortable, that's about looking at ways that we're treating patients and how to get better treatments. Also about post treatment and making sure that we're able to cope with the mental health side of cancer diagnosis and finding ways that we can make that. I say the patient of today and of the future because what I'm striving for is about the person who perhaps hasn't got a connection to cancer at the moment but when they're 70 that they might have an experience themselves or a partner, sister or anyone.

It's trying to look at if I can do something that means that their experience is more easier, even for somebody going through it 70 years down the line. I mean, how amazing it would it be if somebody is able to say I'm going to be able to talk to somebody who is going through cancer because of something they remember from a performance or a theater piece or some kind of story that made me understand what somebody might go through and maybe understand what questions might be arising for that person and so that they can cope better with and beyond cancer.

The Impact of Storytelling in Healthcare Journey


It's been the privilege really and I acknowledged that as a privilege to be able to reflect to my job as a theatre maker. Being a storyteller has been about looking at how I help others tell stories. I worked quite a lot with young people and giving them the tools to be able to understand what it means to be a young human and able to share that with people. That's what theatre is about is about, it’s about looking at what it means to be human and for me I think that has given me the opportunity to be able to understand what it meant to be a young human who'd experience cancer and be able to put that into a language and story that would be accessible to audiences.  

To go, oh yeah I can sit through this this young man talking to me about cancer for 50 minutes, because I'm not sitting there being bored I'm engaged in a story and something that allows you to kind of dive into that world. I'm very privileged that I was I was studying community theater at drama school when I was diagnosed. A lot of my work since then has been about looking for what is my community. How my community are my going to support with my work or make accessible with my work and I realized that the young adult cancer community was a group that I felt a connection with and I was passionate about working for, and it meant that I was able to go wow this is something I can offer.


Improving Communication In Healthcare Delivery | Nancy Michaels

There's so much so many things that people can do that make a huge difference in the way that you as a patient can try to help yourself mentally and emotionally and I was always grateful for that. That's why I say so often to people, it's not only what you say, it's how you say it..


Nancy Michaels from  NancyMichaels.com shares her experience as a patient 13 years ago.

Nancy’s Story

It was 13 years ago in May that I became suddenly very sick I knew something was really wrong with me. I just wasn't exactly sure what. I had been to the doctor several times and I finally was coming off getting home from a speaking engagement. I was flying back and I realized that I wasn't even able to walk off the plane. I was that sick and I called a friend of mine and she came over to drive me to what was my local ER because I was afraid actually to go to a Boston ER. I was petrified that I wouldn't be seen that night and my local ER had seen me several times that previous two weeks. When I arrived at the hospital they saw me immediately and I think it was very early the next morning, I was taken by ambulance to Beth Israel Deaconess Medical Center to their ICU department and it was within a few days of that that I realized that I was in complete organ failure and I would need a liver transplant.

I remember finding out, I think I arrived there Sunday morning and by Wednesday I was in a medicated coma and they almost took me off the list to receive the transplant because they thought I wouldn't make it through the surgery. I was so sick, fortunately they decided to go ahead with the surgery. I believe that was that doing, that  my current liver doctor really making a case for allowing me to get that organ because of my age and because of my relative health prior to being sick. I was fortunate enough to have it, it was a non-compatible blood type organ from a young woman who had died in a car accident the night before my transplant. She had a non-compatible blood type organ so I didn’t have to go through plasmapheresis to change or allow my body to be able to accept her organ. During the surgery though I died twice, the second time was more than two minutes and they actually thought that I might not be the same cognitively because I had been without oxygen for so long.

Fortunately though I did wake up on July 17th at 7:13 a.m. and realized I had a memory of what had happened and I was just trying to really put the pieces together. What I realized when I woke up or very shortly after was that I wasn't able to speak because I was trach and that was one of the hardest parts about being in the ICU wanting to ask so many questions and not being able to really have a voice to be able to ask those questions I had. They were weaning me off that respirator for about a month before I could actually speak to someone and then I was transferred to rehab, for six weeks and rehab is no fun. I ended up being readmitted back to Beth Israel after the six weeks of rehab and the three months in ICU. My diagnosis then was a failure to thrive diagnosis because I just wasn't getting better and I didn't realize until later that a failure to thrive diagnosis is really an end-of-life kind of diagnosis or diagnosis you'd give to a preemie.

I was not doing well, I was there for another six weeks, so all together I was hospitalized for about six months and then finally after being discharged from the transplant unit which is where I ended up being. I returned another 11 times for anywhere from 2 to 11 nights for various complications. I had aspergillus in my lungs, I had two rejection episodes. I had high potassium, I had a lot of complications, I had spots in my lungs that they couldn't figure out what was happening. It was a complete year really of being hospitalized.

An ICU Patient & Motherhood

In the meantime, my kids were very young, I hadn't seen them in months. My youngest daughter was so afraid, she was only six at the time that I didn't see her for almost a year because she was just so afraid and part of her fear was that I had brain surgery while I was in a coma, so a part of my head was shaved. Eventually I did wear a wig and it was the only way that she would really see me, is if I had the wig on even when I was sleeping. I also had to have the feeding tube removed because that was another thing that was very upsetting to her.

So, I did have the surgery to have it put in my stomach but it was just a very trying time and I'm very grateful for the medical care that I did get and there were many things that went really well, some things that probably could have been improved upon but ultimately my outcome was a good one and I'm very grateful for that. I think it took me about ten years to really process what had happened but for the past three years I have been working and speaking to health care professionals about how to be better and more effectively communicators with patients and family members. I am a big believer that what we think and feel really can affect how we can heal ourselves.

Patient Speak

The subtitle is Seven Communication Practices to Improve Patient and Family Experience. I really wrote it based on my own experience not only as a patient but also hearing my family speak about the two months when I was in a coma, the things that had gone on and again things that were really positive and things that probably could be improved upon. There are some great examples of nurses that did that really went above and beyond the call of duty, I just spoke recently to the ICU staff at Beth Israel Deaconess Medical Center where I was treated and told them about a story about one of my nurse’s Frank, who was the first person I actually met the day that I entered ICU. I remember he commented on my manicure and pedicure and asked what it was called and I told him it was a french manicure and pedicure. He said well you obviously take good care of yourself, so if you take good care of yourself, I am going to take great care of you and I really believed him. He was really such an important person to me while I was there because he really saw beyond my illness and really saw me as a human being and I was incredibly grateful for that.

I remember later - after waking up from the coma, I couldn't speak, so I was mouthing out that I wanted to go outside and I was told that I was too immune suppressed I couldn't go outside and I never forget him coming in one day early to his shift to take me for a CT scan. At the end of that he waited for me and he took me out. I was going through a hallway that I didn't recognize was in the basement and I just remember seeing these two black double doors that he opened up and he brought me out onto the loading dock at Beth Israel Deaconess Medical Center.

It was an August day, it was gorgeous it was hot and I remember him pushing my gurney into the sunlight and taking the blanket off and just standing there with me for like five minutes, not saying anything and it was one of the most significant things and kindest things I think that anybody had done for me other than saving my life of course. Which I'm grateful for but he really did see the human side of medicine and did something and went out of his way to do something that was really very healing and very helpful to me in my morale. I'm really grateful to him for that. There were so many other great examples, I mean my nurse Erin who is my nurse practitioner, she's been with me from the very beginning and I remember going in with my parents one day and feeling really depressed, I mean I was really down in the dumps and probably hadn't taken a shower in a week and I was sitting in this you know target's sweatsuit.

I had probably worn the same thing for the past week also and my doctor was changing my medication because I had a bad reaction to it and he left the room and I just was completely convinced I was not going to get better and I looked at Erin she was had her back to me at first and I said, Erin will I ever get better and she turned around and she looked at me and I knew that she didn't know what to say that was a sense I got, but she looked right in my eyes and she said yes you will get better.

I really held on to that. I think that words are so important nobody gave me false hope. I mean there was not a lot of encouraging words. When I came out and asked her that question I am so grateful that she did respond that way because I do believe that. I thought if Erin thinks I'll survive, well she must know something that I don't know and I was going to hold on to that. There's so much so many things that people can do that make a huge difference in the way that you as a patient can try to help yourself mentally and emotionally and I was always grateful for that.

That's why I say so often to people, it's not only what you say, it's how you say it, our nonverbal matter a lot to patients too. I mean we can tell when somebody's in a while or people aren't getting along and it causes a lot of stress that's really unnecessary. One of the patient's biggest fears is to think that their team is not getting along, because they're not getting along they're not communicating and that is very scary for a patient or a family member to feel that way.

The Key to Excellent Patient Experience

I think communication really is one of the key reasons or key factors and people's experience in making it a better one than what it might be otherwise. So, what you say, how you say it,  the way you say things, your facial expressions, your body movements and gestures really do matter to patients and families. All of these things don't take any more time to learn, it's a skill set like any other. There's not a lot of emphasis on this in medical school, which I think is changing but it's a learned skill like any other and I think people can be trained to do this and do it really effectively.

It will make a big difference in how your patients and those family members or caregivers perceive you as well as the medical facility that you work at. It's really about building trust and credibility. You want to have every opportunity to take advantage of that and continue to build that relationship with people. That's what makes people come back and also talk about you and the great experience that they had with you, even if the outcome isn't always a positive one like in my case.

I've spoken to family members whose relatives have passed away in the hospital but they still speak very highly of their medical team, and it was because in large part the way that they were communicated with compassion, with providing context around why decisions were being made and really being you know very caring in the way that they approach their communication and with those family members as well.

I think regardless of what the outcome is positive or negative, it can still be a positive experience for the people around that patient as well and that in my opinion has more to do with the way that they're communicated with than anything else, especially in a situation where someone doesn't survive. Those are the memories that they're going to have for those staff members who were really caring and showed compassion not only to the patient and their loved one, but also to the family members themselves.

I hope that people who read the book will walk away with a better understanding of why this is important, and from the patient perspective. I think it's easy as a professional to sort of understand that yes that's important of course but unless you have been hospitalized yourself or you have a family member who's been hospitalized, you really don't understand fully the impact of what your action might be on someone until you yourself have gone through it. That's why I think it's so important for patients to speak about this, because I think that there's so much that can be learned from us because we will tell you what our experience was.

Through that knowledge and through that perspective, you're probably better able to see another person's perspective inside of your point of view and I think that goes a long way in being able to determine what their experience was and how that could be improved or how it could be replicated. What could be done that would be almost a protocol or a system for continuing those great practices of communication, to improve the patient experience and it really is about engagement, how are you engaging with people and are you doing that in a way that they can connect with you on and can appreciate any of the efforts that you're making.
We obviously want the best person the smartest person in the room to do our surgery to take care of us in that way, but I think that if you have that going for you which I would tend to believe that you do, if we've gotten to the point that we're meeting with you and we've made the decision to have you treat us. The thing that can make that experience so much better is your ability to be a more effective communicator with us and or our family members. That just really solidifies the relationship and provide more effective and positive experience that we have with not only you but with the hospital that you represent. My name is


Fostering the Patient Voice in Medicine | Sarah Kucharski

Living with rare disease, anyone will tell you that it's isolating because you're not just going to like bump into somebody on the elevator who shares your same diagnosis and it's not the kind of thing that there are sport group meetings held in the local church basement either and so is really about social media.


Sarah E. Kucharski is a patient advocate, speaker, writer, patient, communications and health care consultant

Sarah’s Story

I got  involved in patient advocacy because I am a rare disease patient and as a rare disease patient it is extremely important to be able to be actively engaged in care to take a certain responsibility for directing your care, because you’re yourself 24/7, 365 and that's a lot more time than the doctors will ever really get to spend with you. I was diagnosed with rare disease when I was 31 and it actually came about because I had done a lot of investigation into my own care. My background is as a journalist and so I'd read all the information that I could get my hands on, done the research, read the medical journals and actually written an email to a doctor at the Cleveland Clinic and said, I know that sounds kind of crazy, but I think that I have this rare disease. She wrote back and said, I think you're right.

My medical history had been really complicated, for years as a teen preteen, I'd actually presented with gastrointestinal trouble and nobody ever thought GI problems, vascular cause. It took a very long time for us to even get to the point that anyone started looking down that path. I went through having triple bypass surgery that ultimately failed. I lost my left kidney. I had a stroke, four brain aneurysms, three of which were coiled and a gastric rupture. After having that in a period of about five to six years, that's when I said he didn't. Nobody has just this bad luck, like there's got to be something more here. There's got to be something overarching and that's when I really got serious about doing my research and reach the diagnosis.

Isolation & Rare Disease

Living with rare disease, anyone will tell you that it's isolating because you're not just going to like bump into somebody on the elevator who shares your same diagnosis and it's not the kind of thing that there are sport group meetings held in the local church basement either and so is really about social media. That without the Internet, without twitter and Facebook, or even registries and individual hospital systems, their forum board, etc.,, it would be so incredibly hard to find a patient community. We can maybe be a little less particular in that maybe a person doesn't have to share exactly our same diagnosis, but they are a rare disease patient too. So they understand some of the struggles of achieving diagnosis, of routine care, of having anybody else who says, you know, yes, me too, I know what that's like.

Health & Patient Empowerment

As far as my health, knock on wood, everything's actually pretty good right now. Things have been quiet, from just a pure health standpoint, I'm doing great. Thinking about the patient experience and its role in health care for rare disease patients, there's a saying of when you hear hoofbeats look for horses, but we need providers who are willing to entertain the notion that sometimes hoofbeats actually are zebras.

We need people who are willing to think outside the box and be curious. Curiosity, I think is one of the most valuable components of any person is what pursues you to find answers, to explore things, to get new knowledge about anything and so I would encourage that risk taking, that curiosity and if we can use that in a way that advances care, that is not reckless. I think perhaps sometimes people think of curiosity and in rare disease diagnosis as trying to be house MD and it's not necessarily about that. It's about really just asking the questions to explore the possibilities.

Rare Disease & Stigma

Having a rare disease inherently. I think people they hear that and they pause for a moment of it may very well be based in fear of what is this thing? Can it impact me? Is it transferable? Anything like that in rare diseases are really so much more common than people realize. The last statistics that I read about rare diseases was that combined, they affect more than like aids and cancer combined because there are 7,000 known rare diseases. It just means that we're a very fragmented population, but chances are, you actually probably know someone with a rare disease and there are diseases that you may have heard of that get a little bit more name recognition that it's not necessarily as rare as you may think, in a way. It's not something to be afraid of because actually research into rare diseases has unlocked information about many more common diseases that when you look at research studies and research arms that pursuing the mechanisms of these rare diseases, we can find out so much more about things that are more comments such as alzheimer's or diabetes.

Outlook on the Healthcare Environment

My overall outlook on the healthcare environment has changed over the past six years or so. In a way I feel like I used to be more hopeful because I was also more naive. Seeing how long change takes is maddening and depressing in a way. We're still trying so hard to push some of the same needles that we were trying to push years ago. I'm not someone who's been at this for 20, 30 years and I'm frustrated. There have been things that have happened politically that have pushed us backwards and I worry that for people like me, we may lose some of the protections that we’ve gained. I try very hard to maintain a sense of optimism and actually one of the guys here at Planetree, his name is Alan Manning and he's actually, I think VP of Planetree. He gave a wonderful lesson on hope as a speaker here a few years ago that he said; hope can change, hope isn't a stagnant thing. I had always worried that the people who felt like they hoped for change weren't maybe doing enough to impact it, but we can hope for different things in that whole change along the pathway that it grows and it becomes something that expands based on what we've learned. That's the first definition of hope that I've ever really liked. It makes me feel like it does respond to the changes around us.

Advice to All

I want to encourage people to stay at it, to keep trying to make a difference, to maybe know when they get into it that the needle move slowly or at least know that they're not alone in feeling like the needle is moving so slowly. That may be a different problem that we have to solve. We talk about physician burnout, we talk about patient burnout. How can we address burnout from trying to make things better, from trying to find solutions from getting ourselves to a point that we're not going to give up.

Planetree’s Impact

The Planetree organization and this conference is something that I learned about I think three, maybe four years ago and I was utterly shocked that I had not heard about them sooner because this was a group that I could say was actually doing everything right. That how they're approaching care, how they're focusing on patient centered care, but from a very provider focused angle is really interesting. It's really encouraging and it's something that I as a patient support because we often talk about patient experience as being something that’s so patient focused without talking about the people who are actually supposed to provide the care, and caring for those people. Making their environment, their jobs, their reward system, something that is conducive to a healthy care environment, that's only going to benefit all of us. I hope that more people get involved with Planetree. I hope that more systems see opportunities for patient engagement that aren't solely patient focused, but that we have opportunities to contribute to measures that will improve provider staff, employee care, so that they can do a great job of caring for us.


Anna Legassie | Six Hips and Counting

"We need transparency across every aspect of patient care right now. I know that it's very easy to point our fingers at bag of pharma and drugs are so expensive and they are and they shouldn't be in many cases" Anna Legassie. 

 

Anna Legassie is an Athlete, Writer, and Advocate.

Welcome to Anna’s Health Journey

I have been living with systemic juvenile idiopathic arthritis SJA since I was eleven. I’m also one of the lucky few that has a positive rheumatoid factor, which means I have rheumatoid arthritis too. I have both auto inflammatory and autoimmune arthritis. I started becoming symptomatic when I was eight with mostly knee pain that was like my initial complaint. My knees hurt, I was a really active kids, climbing trees, running, riding my bike everywhere.Our pediatrician at the time just basically said “This is probably growing pains, take some children's Tylenol and keep an eye on things”. Over the course of the next few years it went from just knee pain to sort of all over joint pain, body aches, fevers, nausea , headaches , fatigue, and excessive bruising. I remember getting hit during a basketball game, like somebody just hit my arm and the next they had this massive bruise, massive swelling. Then finally I started getting rashes that would sort of cover my neck all the way down to my belly.
When I was in sixth grade I was eleven years old, I played the clarinet, I was very cool. I was ready for Christmas time and we had a big rehearsal for the holiday concert. We'd been sitting for a few hours and when we went to stand when we were done I just collapsed at that point. It was really just that for those three years I had been sick and my disease was advancing but we didn't know. My mom was already on the way to school to pick me up. I was admitted directly to the hospital, tested for childhood leukemia and cancers and it just took a while of ruling things out before somebody said “let's start to look at autoimmune disease, auto-inflammatory disease”. I was 11, it was December 21st, days before Christmas and that was when I got the initial SJA diagnosis. A few weeks later I found myself with really intense chest pain. The thing about SJA that's different than a lot of childhood arthritis is that it can cause inflammation in the liver or spleen, and enlargement of lymph nodes which is why they actually were looking at childhood cancer, leukemia, anemia as well as inflammation in the lungs and the heart. Here I am having this chest pain at the age 11 and by the time everything sort of transpired figuring out how do you treat an eleven year old with chest pain we found ourselves in the local ER.
I was in acute congestive heart failure because of such a massive buildup of fluid around my heart. We were airlifted to Boston Children's Hospital and was put in a medically induced coma for about six weeks really to protect other organs from failing as well. That was just a byproduct again of that the three years it took to get a diagnosis of my disease, as it kept advancing unchecked and we had no idea. SJA is a fairly rare diagnosis, so even after getting the diagnosis in the hospital people didn't really know what to do with it.Nobody thought well maybe you should have a chest X. Ray real quick on the kid before we send her home. I found a little bit of sort of stability for the next few years. Then at 14 I had both my hips replaced and at 15 I had surgery. So 14 was freshman year in high school; Both my hips replaced as a freshman in high school which still is a very strange thing to sort of think about that that actually happened to me. I would have had knee surgery on my left knee when I was a sophomore in high school. I had knee surgery on my right knee you know as a junior in high school. During that time it was actually when the first biologic drugs hit the market for rheumatoid arthritis.

Navigating Bureaucratic Insurance policies

I remember my pediatric rheumatologist wanted to prescribe one of those drugs, she was so excited. They first hit the market and they were F.D.A. approved for adults and I think in two years they got pediatric approval for them. We really finally thought we had some hope on the horizon for treatment, but unfortunately because this was sort of I don’t want to say experimental, but, new this is really the first time we had any of these biological agents. Our insurance company at the time wouldn’t pay for them. They said you know if there is not enough data in the pediatric population from a safety standpoint so no to those. I graduate from high school, I was eighteen years old and as soon as the calendar---it was literally just the calendar flipped and I was eighteen we could go ahead and re-submit the approval for those drugs and get started. Finally, around eighteen I had a little bit of sort of treatment stability in my life. We finally had something that was actually targeting the progression of the disease and not just symptom management, which is really what everything else is, whether it's steroids or NSAIDS. All they’re aimed at is managing the symptoms of the disease not its actual progression.

Living with chronic illness through early adulthood

Things are looking up, I go to college and I was still really healthy---well not healthy, but still a really active kid once I got my hands replaced. By the time I was twenty my right hip replacement failed for the first time. So I had surgery, had hip surgery again as a sophomore in college. I think I was twenty and then and from twenty to twenty six was really sort of chaotic both in my own life and my family's life. My mom was at the end of a terminal illness at that point and I was back and forth from school with her, my sister, my own doctors and sort of trying only keep my head above water at that point. My mom died when I was 22 and I came home from school permanently at that point to help take care of my younger sisters. I had quit my job and I didn't have any health insurance. So I was really self-managing my arthritis through those very palliative NSAIDS and steroids just with my primary care physician, because at that point I didn’t really feel like I could make my own health a priority. I really need to be there to take care of my family.
For a few years of me trying to re-enter the workforce and finish school and all that stuff. I finally had health insurance again and went to my doctor and started with new doctors. I was 26 and I found a new rheumatologist, a new orthopedic surgeon. My old surgeon had unfortunately retired. And the first time I met my new surgeon what was said was “I hate to be the one to tell you this but your hip replacements has failed catastrophically. There is absolutely no medical explanation for the fact that you're walking around. We need to get you in the you know OR A.S.A.P.”.I was back in school at the time like, wait a second. I need to finish spring semester and then I want to take a six week summer class that goes from June into July”. I was like “Let me finish that class and then we'll do surgery”. So I had a bilateral revision of my hip replacements when I was 26. I didn't really understand about that surgery before I've done it is you're going to be 100% non weight bearing on both sides to protect both knee joints.
I needed to go to a rehabilitate hospital for several months after surgery. I had to relearn how to walk I don’t think people really think of that being an experience for somebody who has arthritis. I was discharged and me being who I am full steam ahead and back to work, back to school and my six month checkup which would have been in January the bone graft of my right hip had failed again and so I needed to have that right hip operated on for a fourth time. At this point I was overwhelmed. Just very mentally overwhelmed by what was happening and I remember asking my surgeon “What would happen if we didn't do surgery like next week? Can I do like an additional long term damage?” He said “You're really not going to do long term damage, you're going to be an increasing amount of pain. Think about the socket where your hip goes into and this last line that they put the end it had separated and it was on a single screw and it was rocking back and forth. It was just the eroding one side of the joint and it just rocked back and forth”.
I just said you want to just push this out a year like really since I was eleven years old I had  no normalcy in my life. I just want to work, go to school, hang out with my friends and go to Red Sox games with my boyfriend. Like I don't--you know what- pause, we’re just going to press pause on all of this. And so that's what we did and I had the surgery the following January 2011. That was my last hip surgery, almost seven years ago, which for a long time I wouldn’t even say that. I was afraid that if I said its seven years I was tempting the universe and I would bring this more pain and suffering upon myself.

Arthritis, Surgeries and Resiliency

It’s taken me a really long time to let go of that and just appreciate that I didn't do anything wrong. This is just the nature of this disease, because even after you have a joint replaced you still have active disease in that joint and it still attacks the replacement in the same way that it attacks bone. I've had some complications too that made that bone graft failed. So that was my last hip surgery which is very exciting. Then it was kind of a period of status quo for about five years and sort of cycling on and off different biologic drugs as we tried them and they failed and in 2016 I was really starting to have a lot of trouble with my left wrist, like gripping things specifically.
I remember trying to hold water glass in my kitchen and I dropped it and it shattered. My boyfriend Ken was running in from the other room he was like “What happened?” I’m like “I don't even like know, I just can't hold things”. Really what it is, I have just such extensive damage in the left joint--out the left wrist joint that there's compression of the nerves. There’s all sorts of just not happy things going on in there. But despite all of this I’ve really liked clung to being active as much as possible. So it wasn't just like grip strength at home. I couldn't put pressure on it, like downward pressure to do yoga which is something I love. I Couldn't even lift weights even -- a 5 pound dumbbell, I couldn’t grip to hold it.
So I went to my surgeon fully expecting him to say you know we just need to replace the joint or we need to fuse it. I told him that I didn’t want to do either of those things because more or less I will lose all range of motion in the joint. His idea I which is a little bit--- I'm going to say unconventional, but basically what he did is, he went in and severed five major nerves in the joint. What that does is it cuts off the pain pathway from the damage in the joint to the brain and it also cuts off some of the nerves that were misfiring. It’s only has about a 70% success rate which is why this is not the first line of defense that they go with. But one of the ways they do identify if you're a good candidate is that they go in and they inject the nerves with that they're going to sever with light-a-cane beforehand and if you get pretty instant release--relief rather you're a good candidate.
We did that, I was a good candidate. I did the surgery, I was back in the gym 10 days later with this big funky wrist brace on. And then four months to the day after that surgery I had my third knee surgery on my left knee. I had injured my knee running, but I also knew that there was a lot of other things going on in the joint. I went in, had arthroscopy surgery. They fixed the meniscus tear which is what I had hurt and they also just went and scraped out everything else. More or less bone in the joint, ready for a new replacement as soon as I say go. Some days I feel like go time is like tomorrow and other days I feel like let's put this off as long as possible.

Mental capability of Coping with Chronic Illnesses as a Child

I see this now as an adult and being really lucky to have nieces, nephews and all sorts of wonderful little’s in my life. Kids are so unbelievably resilient, it's just amazing to me. Kids don’t question certain things that we do as adults. Because I got sick at such a young age I didn't really have a normal that other kids did. So I knew that I was going through other things that other kids weren't but I didn't really question it. There was just here it was, much like well this is what I have to do. I have to take this medication or I can't get out of bed. I have to have this surgery so I can get off crutches and walk again. I was on really high dose steroids. Of course my face swelled up, I was easy target I was an easy target for a lot of teasing, a lot of bullying. I think a lot of times kids bully kids when they're sort of afraid of what's happening and I think a lot of my peers saw a very pretty popular healthy athlete one day and somebody who was very very sick the next day. I think that even at a young age my peers probably in the back of their head appreciated that that could happen to them too.

Managing Trauma from having major chronic illnesses, multiple surgeries & consistent series of hospitalizations as a child.

The mind goes to a great length to protect itself and to sort of protect us as we navigate this world. I have been a patient the same hospital for 23 years now, I also work at that hospital now which is wonderful. But there are times when I am running to meetings and I cut through a different clinical part of the hospital and it might be somewhere that I haven't walked through in ten years. Very recently I was---I need to have an M.R.I. and so I went to radiology and they're like “Anna you know better. You know that M.R.I. has moved over here, you need to go here”. I was like “Oh right”. So I as running and I went down this flight of stairs and the flight of stairs was in the pediatric wing of our hospital and I was overwhelmed by this memory of when you're on crutches as a kid-----They probably do this to adults also, but I wasn't allowed to go home until I could navigate as many flights of stairs as I have to get home. so at my house growing up there is the front entry stairs and I lived in a split ranch, so once you came in there was the stairs to go up to the main living level.
I had to be able to successfully navigate two flights of stairs and this stairwell. I hadn’t thought of that in so long and all of a sudden I’m in this stairwell almost 35 years old and I was shaky and I had to sit down on the ground and sort of collect myself and just acknowledge that trauma of everything that I had gone through associated with that surgery and sort of like find a way to manage and let it go and get to an appointment and on time. But it's such a wide spectrum of how I feel about being sick as a kid. Some of it is like a very neatly packaged up into these sort of boxes, very compartmentalize. And even as somebody who goes to therapy religiously and is not embarrassed at all to say so, there are some boxes that we've just not unpacked and I'm not in any big rush because they’re so big to try to take on.
Then other days certain memories or traumas from being sick as a kid just come back and they hit me so hard and it's just so intense to try to weave those into the narrative of my adult life, because now I have an appreciation of really how intense that I had to go through all of this as a kid. How do you think that as a young adult and even to a certain extent as an adult now I am fueled by a good amount of anger and frustration with some of this and it’s taken me a really long time to get comfortable with acknowledging anger. I am like a very non-confrontational person. Confrontation makes me really, really uncomfortable, I don't like being angry, I don't like having fights, I don't like witnessing other exchanges.
It has taken me a really long time to just accept that it's okay to be angry about a lot of these things that have happened to me. And some days I’ll joke with friends and be like how are you doing and I’m just like “Well I'm just a little fireball of rage”. What I've been able to do I think, to a certain extent is acknowledge that anger and then always try to find an outlet for it. so on good days it's you know where I'm very active, it's going to the gym I'll go to the gym for two hours and it's like I don't want to talk to anybody else. I just want to go there and work through my own stuff and just deal with it that way. On my bad days it's just acknowledging that it's okay.
If you mire in that for a day it's not the end of the world and you’re not a bad person and you're not mentally weak. But as a kid I also had parents--I came for a feelings family. My mother's father was a psychiatrist. Being able to express and articulate emotions colorfully is accepted to my family. So I was given space to be angry, what I was never given space to feel was pity for myself. I was never allowed to feel bad for myself. I was expected to go to school when I was able to go to school, I went to school. When I was doing well enough to play sports or go to gym class that's what I did. I was expected to do chores and participate in my family. My mom would bring in laundry baskets and put them next to me and be like “Okay well you can’t vacuum, you can't set the tale but you can sit here and fold laundry”. My parents really tried to give me as much as much normalcy as they could but also still that space to be angry or upset or frustrated because I'm sure as parents they felt it too.

Advice to Chronically Ill Patients

It’s so hard to give other patients advice, even if we have the same diagnosis right, because a lot of the stuff that I've gone through for me sometimes feels like it pales in comparison to what other people have gone through. Then other times and I'm just going to say this and not feel bad about it, sometimes as the other patients I’m like “Can you just like get it together” and that's not very generous of me and I shouldn't do that because I don't know anything that's going on in their life, that there's just such a like wide spectrum of pain and disease progression. I think the biggest thing is finding an outlet that feels good for you. I strive to be super athletic and super active because that is such a core part of who I was as a kid. That sort of anger and that rage that I talk about, a lot of that stems from being a kid who was on the trajectory to be a state if not nationally ranked runner to being a kid in a hospital bed. So every time that I can fight and claw and take even like a little piece of that back, that sort of what helps me keep it together is feeling like I'm not losing ground and I still have part of that as my identity.
That’s not for everybody, it's not appropriate for everybody. I see so many patients that are passionate about art work or they sing or garden or they cook. I know patients that train animals. I think that you can feel angry, you can feel pissed off about all of this. You can feel sad, you can feel like down in that dark place. Now the sunken place is a very popular thing thanks to Kanye on twitter yesterday. But you have to find something that you want to climb out of the hole for. Whatever that is, you want to have kids, if you want to work, if you don't want to work, if you want to volunteer or whatever it is helping find something that feels like a good place to take all of this and direct it at that. The worst times in my life right now even as an adult and being somewhat well adjusted with all this are periods of inactivity when I can't go to the gym.

Perspectives on Achieving Human Centered Care; Advice to all Actors in the Healthcare Space

I love my hospital but it's not perfect because no system is and I think for patients with chronic illnesses in the biggest places that the health systems fail us is by being so sort of like locked into lab reports and that's live and die by the lab report. Good labs mean you're doing well and bad labs mean you're doing poorly. But there is not necessarily but the holistic approach of what that all means. My disease is pretty stable right now and that’s great. So sometimes my labs look good, but what I feel in response to them feeling good there can be a big gap. So whenever I'm talking to new patients about; how do you get to know your providers, how you advocate for yourself etc. I think it's really important that doctors and providers are able to look at the patient as a whole person.
These fifteen minute encounters that we have with our doctors and then they have no idea of the last four to six months of our life depending on the specialists that happened outside of those fifteen minutes. So I worked really hard to get my doctors and my care team to understand what are my life goals because treatment goals really don't mean much if they aren't supporting life goals. When you've been sick for a long time you're able to normalize a lot of things, you're able to normalize a lot of pain, a lot of suffering. you're able to normalize not being able to do things. And when I really decided that I wanted to get more active, that I wanted to lose some weight and feel healthier and happier as a whole human being, person and somebody in a relationship, where there's intimacy and all these different things that make you a whole person.
I realized that I wasn't doing a good enough job saying “I don’t think this treatment is working anymore and we need to try something new”. And so that's kind of I'm always trying to get you know help patients with is “What are your life goals and what you want to do? Do you want to garden? Do you want to be able to pick up your grandkids and have that not be painful? Do you want to walk around the block with your dog? Like what is your big goal in life right now that your illness is an obstacle to? Okay well your doctors need to understand that anything short of that is a failure on their part, which is kind of a harsh black and white way to say it but I think doctors should be motivated to help their patients live really full happy lives outside of their office”.

Most Urgent Need in fixing Healthcare Today

We need transparency across every aspect of patient care right now. I know that it's very easy to like point our fingers at bag of pharma and drugs are so expensive and they are and they shouldn't be in many cases. The fact is, health care as a good or a service or a product is the only thing that you buy without knowing the price up front. The lack of transparency by providers whether it's hospital or doctor or whatever physical therapist doesn't matter, the lack of transparency on what you're actually paying for your care is galling and should be illegal.
It would be illegal for almost any other service. The lack of transparency on the insurance side of what informs their decisions. We really don't know and of course we saw and I don't necessarily like to name names, but we saw a major plan recently come out and say we didn't actually review any of the information in the period of peer medical review. We didn't do that, so there's no transparency and how coverage decisions are being formulated and then when you do get to pharma there's not a lot of transparency in how they price their drug. So this lack of transparency just to me is one of the biggest drivers of cost because--these three systems are not talking to one another. These three systems are entities have no incentive to work together. There’s so much tension that at the heart of it all is the patient and patients are suffering, but the lack of transparency at this point I just don't understand how much longer we can let this go on.

Transitioning from Patient to Patient Advocate

I was given a lot of agency in my care as even a very young child. I was always allowed to question things and to question decisions and ultimately if it did necessarily put my life at risk I was allowed to say no to things. I made judgment calls when I was in high school to come off certain drugs because for me a lifestyle standpoint I could not take the side effects anymore. So advocating for myself has always given me a sense of empowerment in my own illness. Really it was six or seven years ago I had sort of reengaged with different foundations and was back doing a lot of fundraising.  
Fundraising is great and really necessary, but when I talk about things that fill you, fundraising is definitely not one of those things. And I was approached by an organization to attend their advocacy summit in D.C. and I just remember sitting in this room, like a hotel ballroom for a conference and I was like interim, was just like oh my gosh this is what I was supposed to be doing. I had no idea that I could take my story or what I wanted to do to advocate on behalf of myself and it can be powerful for other people.

A Wish for the Future of Healthcare

I think “patent-centered” is a word that's getting used a little too loosely right now. I think that a lot of organizations set out to be patient centered and what I see is their biggest shortcoming, whether it's payers or drug companies, startups, hospitals, whatever is their design solutions for patients, whatever they might be within the healthcare system etc. They get down this process and they have version one and two and three and then they invite patients to the table to basically weigh in on whether this solution is valuable. It's such a waste of time to everybody and at this point I say no to these opportunities because I'm planting my flag on the fact that I want patients involved from the word go.
If you're calling something patient centered no matter what it is, whether it's on the state side or the federal side, F.D.A. The F.D.A. is always forming new patient groups, whether it's a payer, hospital or pharma company wanting to do some nice, happy feel good P.R. If patients aren't in the room from the jump then you've already failed. The other thing is that as we look to patients and we empower them to be a part of this and drive process and drive change---when I see patients paid I feel like the system just sort of continues to take from us and suck us up, chew us up and spit us back out. It's not really equitable to ask patients to help drive change without compensating them accordingly. So involve patients early and often and pay them and compensate them as the experts that they are.
A lot of people know me as Six Hips on Twitter which is sort of the condensed version of my blog, which is Six Hips and Counting which I can take no credit for. My best friend Jenny who's an English teacher and far more creative than I am came up with that. Hoping to stay at just six hips for a while, but on Instagram I’m Anna_Evangeline. I really put kind of my whole life out there for better or for worse. Always looking to connect with more patients and more projects like this!

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