I recently interviewed Annie Rappeport, a 32 year-old American PhD student, about her experience of chronic illness as part of a listening project for the International Listening Association. Clean questions were used to invite Annie to consider what has worked well for her in navigating the past six years of ill-health. It is hoped that her very eloquent and moving answers might provide a useful resource for others who find themselves in a similar situation and for the healthcare providers who work with them.
What follows is an adapted and abridged version of the conversation that took place. Various themes were identified after the interview, with a subheading given to each.
Could you give an outline of the course that your illness has taken?
My chronic illnesses began shortly after my father passed away in 2010. For a long time I thought my symptoms were due to stress. When I did seek a further explanation I was told by the University Clinic that I had polycystic ovarian syndrome. Whilst trying to adapt to this I was working in my first full time job in the career of international education - a vocation that I love. I worked there for just under six years and travelled to many different countries. After one prolonged period of travel my symptoms worsened. I started falling asleep driving, showering. I even fell asleep during a workout and woke up on the floor, which was pretty frightening.
I went to a neurologist and sleep specialist who diagnosed me with chronic fatigue syndrome. But over time I developed autoimmune symptoms that would flare up. I had chronic urticaria, or hives, which left me close to anaphylactic shock. They couldn’t figure out what the cause was and during one visit to ER (A&E) they gave me steroids. Instead of improving I got worse.
Over the next few years I saw 35 doctors but I still got worse. Then I saw a doctor who seemed to truly care. I felt he saw me as a person; I reminded him of his daughter. He worked with me until he was able to make a diagnosis of a type of roundworm called strongyloides, which I had probably picked up on my travels. I didn’t care that there were hundreds of little worms inside my body, I was just so grateful to know what was wrong after being a mystery patient for several years. I was told that I would feel better after about 12 months of treatment and was so happy when that came true. I felt well for 8 weeks, but the parasites had weakened my immune system and I became vulnerable to a new threat; I developed a severe case of mononucleosism, which attached my liver. I ended up being bedridden for several months and had to leave my job at the age of 28.
Currently I still live with chronic illness and pain. I’m unable to take pain medicines – partly because I’m allergic to them and partly because of my poor liver function – and there are still some mysteries that we’re trying to solve. But I do feel that throughout this journey that I’ve learned how to better advocate for myself.
What have you done that has worked well for you in managing your chronic illness?
1. On being a connecting point
Learning to be the connecting point, the point of synthesis for the information, has been very helpful. Our system is ‘siloed’: it’s very specialised. But a patient is one holistic body and one human being on one journey. I learned that I was the only person connecting all the specialists. I created a notebook with the different test results and my own personal experiences over time. In retrospect this notebook was probably a bit too cumbersome: very few doctors are going to have time to pore through the whole thing. What I’m working on now is synthesising this very large notebook into something that can nutshell my main points – an infographic perhaps.
2. On communicating with healthcare professionals
I’ve learnt that there is a certain amount of navigation that I need to do in conversations with doctors to explain and connect what other doctors have said so that I don’t appear insulting. For example, I once had four or five doctors diagnose that I had a terrible case of mononucleosis. I then went and saw an immunologist. After waiting some time to see him, the first thing he said was, ‘You don’t have mono, you’re too old to have mono.’ And he was done. I was stunned and responded with, ‘Are you truly disagreeing with all your peers who actually referred me to you right now?’ That wasn’t the best response! Even though it wasn’t my intent, I was responding to his strong opinion with an adversarial-sounding rebuttal.
This experience made me realise that I needed to find a better way of speaking to doctors whose opinion differed strongly from the other doctors I had seen – especially if I want to walk away with tools to help me cope with the day-to-day management of whatever is going on for me. What I try to do now is listen to their initial thoughts, take them in, and then approach the conversation with questions. I’ll say something like, ‘I hear what you’re saying. Can you explain perhaps why these doctors interpreted this differently?’ I’ve had far better luck with asking questions in this way.
Sometimes the specialists I’ve talked to say things that I perceive as dismissive – like, ‘There’s very little you can do so you basically need to toughen up. This is what a lot of people have to deal with.’ I’ve learnt to counter this with, ‘I hear what you’re saying. I appreciate that and I’m in such admiration of how many people like myself live with stuff like this. That being said, if you were in my shoes would you settle on living with something like this?’ I can then go into an explanation of how my illnesses impact my daily life.
A lot of times in doctor’s offices I feel more like I’m turned into a problem or a case study. As a researcher I understand this because that’s what I do. But I still need it to come back to, I am a human being sitting in front of you who is trying to live my life to its full potential. I’ve found it helpful to list out life goals that I’m trying to achieve when I go to see my primary care physician (GP). Rather than saying, ‘I’m still trying to figure out what’s wrong with me’ I’ll say, ‘I’m trying to figure out how I can do field research again because I want to do peace studies in Cambodia and I’m not well enough to do Fulbright [an intercultural exchange programme]. So, let’s get creative. What are ways you think I can improve my daily life so that I can achieve these life goals?’
3. On being the expert of your own experience
When I first started seeing the volume of doctors that my conditions have necessitated I thought that doctors were the experts. I didn’t really think of medicine as a practice, but it is a practice and they don’t call it anything else but a practice. It wasn’t until two or three years ago that I realised that I needed to participate in this practice for it to work. I needed to be informed enough to know which questions to ask because it’s impossible for anyone to be an expert in me. You can’t be the expert in all the different medical fields, but you can be the expert in your own experience.
I got a lot better at understanding how to articulate symptoms. For example, when you go to a doctor they often ask you ‘Where’s your pain on a scale of 1-10?’ (10 being the worst pain you’ve ever experienced and zero being no pain at all). To begin with I didn’t want to sound like I was complaining. I’d stew over that question and think, ‘Well, how bad am I today? I’m not bad right now but if I don’t tell them the number I felt last night they’re not going to believe me.’ Or, ‘I haven’t had terrible injuries from some accident. Maybe I don’t know what the feeling of 9 or 10 really is. How dare I even claim to have that.’ I felt really sick but I always answered with a 5 or 6; I didn’t want to claim that I had a level of pain that people with severe trauma have.
This did me a giant disservice because I had a deathly parasite. I had something that was killing me, although we didn’t realise it. I needed to not compare myself to the rest of the world. I needed to just explain, with my own self as a reference, ‘You know for me in my life it’s an 8, or it’s a 9’. My condition could then have received the attention it needed to be caught earlier.
4. On participating and being resilient
There’s a lot I want to do in my life. After that first year and a half of diagnoses I could have been someone in my mid-twenties who said, ‘I guess this is it. The doctors have spoken. There’s nothing they can do. This is my new normal.’ But that was a level of giving up that I wasn’t ready for. I still don’t know what solidified me in knowing I was not OK with that. I’m just so glad I didn’t resign myself to giving up.
I needed to be an active participant in finding out what was wrong. It’s having the belief that it’s up to me no matter how many people say they can’t help. For me, this meant going further from home to see different specialists. It could have been a very tragic ending for me if I had just listened to the two primary care doctors who thought all I had was an allergy and I needed to toughen up. Participating is having that resilience and not giving up.
5. On being able to challenge the doctors
When you’ve seen so many doctors there can be times when you feel a little bit, not just dismissed, but almost accused; ‘Why are you back to see me?’ There can be a sense that you’re like a thorn: you’re annoying because you’re not an easy case; you take more of their mental energy and they still don’t have an answer for you. They have dozens of cases to fit in to the day and you’re just one person.
So, I started reading books that are used in nursing and physician training because I wanted to understand what they had been taught about communication and time management. I wanted to understand where they were coming from because as much as I’m a human, they’re a human too. I realise they may need some sense of detachment in order to do what they do and reading those books helped me to get a better idea of their perspective. It helped me to relate to them a little bit better.
But it also allowed me to ‘push back’, to challenge a bit, to say, ‘I know I’m not an easy case but …’ For example, I had a six-month follow-up appointment with a liver specialist. I have liver that doesn’t function well but doesn’t merit having a transplant. If you don’t fall into the transplant group it’s a case of ‘live with it’. When I came to the appointment the nurse said, ‘I’m so sorry we forgot we had this appointment today. We didn’t even get the test assigned to you. Can we meet back up with you in 3-4 months?’ I understood that they had all these different pressures going on in their life, but I had already waited six months and I wasn’t OK with waiting three or four more. I said, ‘You know, I’m happy to sit here with the doctor as he reads my file. I’m willing to wait but I don’t want to wait months to come see him again.’ When he came in he was a bit flustered and seemed embarrassed. I said, ‘It’s fine – let’s just work on it together right now.’ He skim-read the first couple of pages of my file and said, ‘Oh yeah. I remember you now. You have a really bad liver. You know we don’t have treatments for a liver like yours. So, you know, [wiping his hands] I’m done with you.’
I was really stunned. I echoed what he said back to him and I said, ‘I appreciate what you’re saying but I need you to tell me where else I can go because I can’t [wiping my hands] do that with my body. I live in this. I have to go home in this. I go to work in this.’ And when I did that hand gesture back to him, echoing his exact words, he was taken aback and apologised. He gave the same information back to me but in a much more caring way, which I appreciated. And hopefully he won’t do that to another patient in future.
I do think being able to challenge others is important. We may understand the challenges they face, but at the end of the day it doesn’t change what they’re tasked with. If you do notice that tests haven’t made it back to you, or that the notes have a discrepancy, I think it is worth calling people out on that and say, ‘Please recheck this.’ I’ve had people write down that I was not allergic to a medicine that I’m very allergic to. There was a time when I was so submissive and shy that I would have just stayed quiet and nodded, and then gone home and vented about it. But if you’re working with a doctor who wants to be a good doctor they want to know if an error like that has been made.
You can be civil and respectful and still stand your ground. You can say something like, ‘I’m not leaving until this is corrected,’ or ‘Could you translate that to regular-day person talk so that I can understand it?’
6. On listening to your body
I think something that I still struggle with is knowing how to listen to my own body. I was healthy for the first twenty-five years of my life and was one of those folks that like to burn the candle at both ends. I wanted to do everything I possibly could and didn’t think sleep was that important. I didn’t realise I was ignoring my body, but now my body will be screaming at me to stop, to pause, to rest and take care of myself.
I think I’m a little bit better at listening to my body now. If I’m not in tune with my body I pay far worse consequences in the long run. If I start to have hints of not feeling well now, I really do need to slow down or I might be sick for a week. The consequences for my actions are tenfold what they used to be when I had a healthy body.
7. On disclosing your illness to others
One of the things I find hardest is that I no longer fit within the cultural norms of what it means to be a person of my age doing what I should be able to do every day at the workplace. Even in my personal life those expectations are really hard because I don’t want to let anyone down. I find that folks like myself often start to overcompensate. We are in a default defensive mode because we don’t like being questioned. We also don’t want to be pitied. We don’t really like saying, ‘Hey I feel really sick. Today I’m in a lot of pain. You can’t see it but I am.’ If you get vulnerable and transparent enough to share that with your employer and the very first thing you hear back is, ‘Oh but you don’t look sick. You look great,’ it feels more like an accusation. I start to think; Is this all in my head? or perhaps, Do I need to prove to you that I hurt because I’d rather not.
I think the people that I’ve really appreciated in my life have changed the whole paradigm; they’ve changed the whole approach to what the default thoughts on chronic illness are. About a year ago now I had a very hard week at work. I pushed too hard and I just started breaking down in my office. I didn’t know that anyone was around but this co-worker of mine showed up. I hadn’t shut the door and she saw me. I felt caught in a very weak moment, but she was very kind. She sat with me and I told her all about my chronic illness. At that point I’d never disclosed unless I absolutely had to. She started crying and said, ‘I had no idea. Nobody has any idea what you’re going through while you’re doing the amount of work you do here. And the fact that you feel bad about yourself breaks my heart. I hope one day you work in a place, and other people can work in a place, where the skills you have because of your experiences are seen as a value-added instead of a job liability.’
She just saw me as Annie. Nothing in her eyes changed about me except for positive things. What I had seen as limitations and parts of myself that I’d tried to hide, she saw as strengths. She really changed my life that day. I thought; Yeah she’s right: I am different but it’s not all bad.
I would say it’s still important to be cautious about opening up. I can’t say that everybody’s a good person to open up to. But if get a sense of trust and you are able to disclose then it can be relief. You don’t have to pretend any more. It means not having to respond to, ‘How are you today?’ with ‘Oh, I’m doing great.’ I can just say, ‘You know what, I’m feeling really bad today but I’m happy to be here.’ I do not want any pity. It’s more helpful to have people just nod and be like, I get that, and move on.
Hiding things may have helped me saved face in the short term with certain people but those aren’t the people that I want to be working with. As soon I did start disclosing I realised that, more often than not, people are caring and understanding. The saddest thing is there’s a lot of us and we’re all trying to get by and in doing so we’re adding to the pressure of creating a ‘norm’. Even in my own PhD programme there are many of my peers going through similar challenges. By hiding things and overcompensating I was creating an even more stressful, competitive environment.
It takes a lot of bravery to disclose and I don’t know the best answer for how and when to do that yet. I just wish I had disclosed earlier. But everybody has their own timeline.
8. On peer support
Seeking out and finding others like me has helped. For me it’s happened organically because speaking to people with lived chronic illness experiences is now one of my research interests. I have found talking to each other is such a healing process – not having to go through that ‘learning curve’ about the challenges we face.
I personally didn’t find these groups on the internet very helpful (although I’m sure there are great ones out there). I joined a Facebook group, for example, and waited for several months for something uplifting, but it just felt like a spiralling down into a world of negativity: ’I couldn’t get up today’ was met with, ‘Oh you couldn’t get up today, I couldn’t get up all week’. Nothing felt renewing about it or refreshing. But meeting in person and having a conversation feels wonderful.
9. About challenging the way we think about disability
Changing the lexicon, the way we talk about chronic illness, to a strength’s perspective would be so helpful. I’ve talked about this with a friend who is a native American – an Ojibwe. We first met at a conference a woman had talked about a disability certificate that they were going to offer at their school. The way she talked about disability felt very objectifying – it was like, this is the population, this is the demand, so we can make money if we offer this certificate and these are the things we’re going to do. I challenged her in her Q & A and said, ‘You know, it would be great if you involved people who have this problem within the design process.’ She responded with a kind of attack; ‘All of you that have disabilities and want to call them possibilities are not helping yourselves. You just need to cling to the fact that there’s something wrong and then people will help you with it.’ This friend spoke up, ‘You know in the Ojibwe language we have no word for disability. The concept does not exist. What the English language calls disabilities, we call gifts. And we operate on a whole different thought process because our language is so different. We don’t even perceive of it as a limitation or something that’s wrong with you. It’s just something that is different about you that is actually a strength.’ I hope that one day this can be true in English too.
I sometimes think that going through a chronic illness journey is like being a kind of Odysseus: stuck out there; exiled to the water; having all these different tests and trials. But you can come out much stronger from this experience and gain different skill sets.
10. On support from those who care about us
I am extremely grateful for my family and friends. I also have a very special person in my life who’s been around for all of this and we ended up getting married. It’s actually kind of a special gift we’ve been given to know who sees us for our strengths at a very deep level.