A Fine Line: Prejudice in Chronic Illness

For many people living with chronic illness, medications and medical treatments only account for half the battle we fight, if that. The rest of the struggles we face are from people's misconceptions and misunderstandings, sometimes even from the people who are supposed to care for us.

Fatigue and tiredness play a bigger part in chronic illness than the lay public may first think, and affect us a lot more than anybody could anticipate. In my case, I live a full life, no different from the life I would be living without Ehlers-Danlos, AVM or any of my other conditions. I went to school, had lots of friends and passed my first year of medical school with a merit. Most of the time, my friends are great about my conditions and don't treat me any differently for that. 

The problem I have, however, is with doctors who don't know and don't seem to want to know about anything less common than your common cold. Unbeknown to them, I am fully aware that they judge me for what I say and how I feel, and apparently it's not okay to be anything other than the average patient. It seems grossly unreasonable to think that I am being judged for feeling the way I do, physically, due to my conditions. I'm not sure how many of these said doctors have ever thought about it that way.

I know that sometimes, there are people who perhaps don't make the best of their time and spend it making a fuss or dwelling on the unhappy things. However, it's frustrating and is a shame that doctors take that image in, and apply it to nearly every patient that walks through their clinic door.

These doctors have no idea what damage they can do to people, and are blind to the effects they have on people's confidence (or lack thereof) and wellbeing. They make it difficult for patients to trust doctors as a whole, especially new doctors, and make patients feel judged or paranoid when that's not the way it should be. I'm not denying the existence of mental illness and the likes of hypochondria, but I just wish doctors would consider things more carefully before saying the first thing that comes to their minds.

I was diagnosed with Ehlers-Danlos Syndrome by the most well-known EDS doctor in the country, and have a letter detailing the tests and results that led to the diagnosis. Yet, a lot of my doctors treat it as a provisional diagnosis of a disease that barely exists, by addressing it as the "possibility that [you] may have some sort of collagen disorder". Things like this still happen to me, although slowly, I'm disengaging from those who refuse to believe in me and in EDS. I don't need that kind of attitude, and neither do my other doctors who fully believe in EDS and actually want to help. 

Illness and me

Sometimes, it's easy for us to look at our lives and pick out and be sad about the bad things in our lives. It's human and it's normal, and occasionally it's helpful to let things out and we're allowed to be sad when things aren't going so well.

For me, I know about the suboptimal things that have been, and are going on. But I know that whether I'm sick or not, I'm still me, and nothing short of a personality transplant can, and will change that. Even though it's a big part of me and has implications on a lot of things I do, there's so much more to me than Ehlers-Danlos, AVM, osteomyelitis and everything else put together.

I'm happy. Happy with everything that my life is at this moment, and I hope none of that is set to change. There are people who will ask me all the time how I am, and how my "hospital life" is getting on, and sometimes I wish they wouldn't. A lot of the time, they mean well, and want to know how I'm doing. I just hope that people don't think that I'm defined by illness, because I'm not.

I don't think I'd be the person I was without everything that's happened over the past few years. On the outside, it seems like a rotten deal, but the experience has helped me to learn how to deal with things, and I'm no longer feeling lost. It might sound strange, but I feel like everyone else, and like how I used to. Physically, of course I know that I feel different, but my mind has adapted to that to help me move on and get back to achieving what I was achieving before this came along.

I hope that people aren't sad for me when things happen because I don't like seeing people upset when I'm feeling okay and when I know that everything will be fine. Instead of people looking in from the outside and being sad, I want to take people with me on my journey and show them everything that I've learnt. So, if you'll let me, I want you to come and join me, and learn too that living in my shoes isn't as distant and alien as it seems, even if I may unintentionally imply that through my words sometimes.

Long Road

We decided that I would revisit my rheumatologist now that I am "stable" from the point of view of my osteomyelitis. A week ago today, I had the appointment, which turned out to be a relatively successful experience as well as a confidence-booster.

I was pleased to see the consultant, nearly three years after I'd first seen him. We talked about medical school and other things in my life, and then moved on to how things had been with my osteomyelitis and AVM. He was shocked to hear of the way I had been treated, and how people had overlooked important factors when deciding on my treatment. In a way, it was liberating and I was so relieved to hear that I wasn't crazy and that my concerns about peoples' attitudes and actions were shared by someone so well-respected and renowned in the medical world.

We ran through things briefly, and then talked about the problems he thought I had with my autonomic nervous system. I've been experiencing symptoms with my digestive system for so long now that it felt strange for someone to want to help. Of course, it was welcomed help, but it still felt bizarre for someone to take me seriously. Provisionally, we think that I have some sort of motility disorder with my digestive tract due to an erroneous autonomic nervous system. Additionally, he found that I become tachycardic when I stand up. I'd always known that I become dizzy and light-headed when I go from lying or sitting to standing, but this has been apparent since I was very young and so I never thought there was anything wrong. 

As a result of the appointment, I have been referred to a neurogastroenterologist and a neurologist, as my rheumatologist is sure that they will be able to help me improve my quality of life. Though privately, the neurogastroenterologist has no appointments until September, as he is away until then. I am yet to hear from the neurologist's office, but am hopeful that I will be able to get an appointment before term starts again. 

I'm definitely satisfied with the outcome of this appointment. Although it's never nice to be told that there's something wrong, I've always known that things haven't been right and have come to accept that. What's great is that I shouldn't have to accept too much more pain and discomfort, because there's actually people out there who want to, and will help me. 

Face to face

Having come face to face with my own mortality several times in the past few years, I decided to put my thoughts down in writing to try and make sense of things in my mind a little better than I have been so far.

Yesterday, with another platelet transfusion, I had another nasty reaction, which sent my body into overdrive. I'm not quite sure what happened or how I got here, but I certainly don't feel good. I don't want to think about the series of events that took place, because that would only scare me more.

Despite the weakness and discomfort I am in now, it's weird to think about how well I am compared to how I could be, and how I actually was yesterday. Once again, it's brought to the fore how important it is to have family, friends and love. Similarly to last time, I was alone when this all happened. It began in the day unit, and I'd thought that I'd be in and out within a couple of hours at most. It was around midday when things started to go pear-shaped, and about four hours later when my parents arrived at my bedside.

Having gone from something so simple, suddenly to something so drastic, makes me wonder. I look at my physical self and ask why and how I made it through so much, with hardly anything to show for it. I know I am lucky.

I'm still not sure how to coherently put my thoughts down, but for now, this will have to do. This year has certainly thrown a lot at me (I'll write about the latest soon), but I know that I will make it through. There are a couple of special people who I love and am thinking of very much at the moment. One of my friends goes into hospital on Monday for GI testing, and has had a lot thrown at her lately. Please pray for her!

Placement: Day 1

Placement today began at 12.30pm, because I had to meet with Human Resources before starting anything clinical. I was SO excited to start - it's cardiac surgery, and something I think I'd be really interested in.

After the administration work was done, I went up to the cardiac surgery ward, and met the SHO with whom I would be working this week. The registrar was also there, and it seemed like such a lovely team. A consultant I'd worked with before was also there, remembered me, and we talked about things that had happened since I was last attached to that hospital. He invited me to examine one of his patients with HPOA (hypertrophic pulmonary osteoarthropathy), who was due to have a lobectomy tomorrow morning. He said that the HPOA would be greatly improved, if not disappear post-operatively. It was amazing how the osteoarthropathy disappears after having the lung cancer removed.

It's so fascinating to see how things I'd learnt in theory were true and applied in practice. Today was a short day, but tomorrow begins at 7.30am, which means I must wake up at 5am, to get there in time. I'll be meeting the other doctors in the Intensive Care Unit, and beginning with the rounds, before heading to surgery. I can't wait!