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 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.