Quick personal update: I've written two painfully (on the hands) lengthy blog post drafts over the last couple months to try and update about what's happened over the summer, but I ended up not posting them because they're a mess I don't even know how to really talk about it all. Long story short, the internist who was so validating and full of ideas during my intake at the start of the summer totally reneged on all the help he offered when I went for my follow up in September. It seems as if he talked to some of the other doctors I've seen, and they talked him out of trying. [Insert lengthy diatribe about prejudice towards complex patients and sick women, and confirmation bias.] If I wasn't so worn down and jaded already, it would have crushed me, but this shit never surprises me anymore.
My GP who we found in the spring when our old one left is turning out to be awesome and is really working to help me make progress with trying to get a diagnosis. The validation and support she's lent have been nothing short of a small miracle. And while I'm still not sure what the new rheumatologist thinks, he's continuing to run a couple more tests and bringing me in for frequent follow ups, so I'm trying to have faith he might figure things out. Both of them seem fantastic, and my GP definitely thinks I have a real deal, potentially treatable condition. While the years long endless medical purgatory continues, I'm still trying to stay optimistic that eventually there may be a breakthrough... Anyway, onto a recent discovery that necessitates sharing!
Last week, a documentary aired on the CBC called Sickboy. It's about these guys out east who are best friends, one of whom has cystic fibrosis, and they do a podcast of the same name. The doc and the podcast are both not about health conditions, but what life with illness is like. And they leave NOTHING unsaid - they really get into all the stuff you normally don't talk about and it is the most comforting thing I've come across in ages. I don't know how I missed out on the podcast this long, as it's been running for quite a while now, but I've been enjoying listening to old episodes and getting acquainted.
First some links, and then some thoughts.
- Sickboy website
- Sickboy podcast on iTunes
- Sickboy doc on CBC (only viewable in Canada)
- Sickboy doc on YouTube (viewable internationally - heck why don't I embed that right now!)
While their style might not be everyone's cup of tea (and it's hard for me to get on board with the whole "laughing at illness takes away its power" thing), the overall message and what they're doing is fantastic and so needed. Normalizing illness, and talking openly about illness, including terminal illness, is the biggest way to stop isolating sick people. And that is desperately needed. One thing I especially appreciate is how they've taken different types of illness out of their separate silos - chronic illness, disability, terminal illness - it's all about being sick and the impact that has on our lives and those around us.
One aspect that was really hard for me to watch was actually the extreme solidarity and support that the two healthy guys, Brian and Taylor, have for Jeremie, the host with CF. His family is also really supportive and present in his life, but these guys are clearly his (chosen) brothers. I won't lie, it left me feeling really envious and brought up all the grief I feel around how abandoned I've been by nearly all the people who were major parts of my life before my illness got more severe. Sure, the loss of these relationships may not all be directly caused by my illness, but it sure was a strong indirect cause. When my "needs" took precedence over others' "wants", I became unable to people please and meet everyone's demands from me, and instead of understanding and supporting me, most of them just disappeared. And not before slinging some intense shit my way in the form of shaming, blaming, lashing out, and all manner of insults on top of injury. It was a HUGE wake up call about the kinds of relationships I had and some of the major patterns in my life (which I hope one day to be eloquent enough to share more about with you).
Life lessons aside, the documentary really brought to the surface something I've thought about a lot these last few years, which is the privilege of having a diagnosis. For me, the struggle to get proper medical care and try to get a diagnosis (and hopefully treatment) has been very complicated by both the complexity of my symptoms as the illness has advanced, and ironically, also by my not having gotten diagnosed earlier. Of course, this was not something I had any choice in, but the number of times I've had a doctor say "if you had something serious going on you would have been diagnosed by now" is infuriating. There's an assumption that the previous care sought was adequate and timely, and for me that couldn't be less true. None of the doctors I saw even TRIED to figure out what was wrong with me until I became totally debilitated to the point where I could no longer even work part time. And since my whole life I was basically told to suck it up and keep pushing myself to accomplish, regardless of my body gradually but progressively breaking down, that's exactly what I did until I couldn't. And when I did finally try, the half assed labels (I won't call them diagnoses) that I did have prevented doctors from believing me that something new was happening, and trying to assess what was going on properly. That had a myriad of consequences, ranging from the financial - not having any sense of my rights to compensation by the government, and having no leverage (nor wherewithal) for trying to access insurance coverage for long term illness from the job I left when I "burnt out" (aka. couldn't keep up and blamed myself for not being tough enough) - to absolutely destroying my social universe.
The lack of a name for what was wrong with me - the lack of medical validation - left the door open for confusion and doubt. Both family and long time friends who should have believed me and been there for me, the way I'd been there for them for YEARS through their own hard times, didn't really seem to believe or understand what was going on with me no matter how hard I tried to explain it. The network of people I considered "my people" (both blood and chosen) disintegrated while my health did the same. When I was forced to change the parameters of my relationships (which in hindsight were mostly really unhealthy, so silver linings...), I was cast out. Maybe I shouldn't be surprised, since I never felt understood around my illness even when it was less severe - in fact, I bet some of the people who turned on me weren't even consciously aware of what was happening, aside from my not being as "fun" or tolerant of crap anymore. From childhood onwards, I was often teased, and blamed for having different abilities and needs, and it was seen as a choice or a personal failing or being "uncool". (I have too many stories it's hard to pick an example, but my "best friends" who I met in university and kept hanging out with until this all happened just after my 30th birthday, no joke used to call me "No Fun Ariane" just because I couldn't stay out as late, or party as much, or drink without getting really sick.) But even with all the warning signs I ignored in the name of fitting in, it still caught me very off guard and was intensely traumatic for me. I honestly don't know where I'd be if I wasn't lucky in getting together with Bruno right before this happened, and even more lucky as far as his ability and willingness to believe me and weather this medical purgatory together. I shudder to imagine it, and am incredibly grateful to have had one person REALLY be there for me, as well as a couple other friends who stepped up to fill the spaces left behind. I know some who have been even less lucky, and I count my blessings.
From my experiences, and also those of the many people I now know who are also in the purgatory of un(der)diagnosis, it's clear that unless you're incredibly lucky and have a truly fantastic set of people around you, the rallying that happens around people with respected, diagnosed illnesses does NOT happen when you don't have a diagnosis. (The same could be said about when you get diagnosed with confusing, less understood illnesses like chronic fatigue syndrome or fibromyalgia, not to mention mental health conditions). People don't flock to be there for you or fund raise in your name or bring you a casserole when you're undiagnosed or diagnosed with something bearing a lot of stigma and continue to be sick for years. When you don't get a diagnosis, and especially when you don't get better after a short period of time, doubt and frankly boredom set in, and they disappear.
Diagnosis is THE ticket to being believed and understood, and to validation, medical treatment, social support, social security/disability payments, insurance settlements, being able to properly plan for the future, being able to process and grieve what's happened... I will never understand the many medical practitioners who've tried to tell me that I should stop trying to get diagnosed, I can only tell myself they have no clue what it's like. And that was the thing that was so hard to relate to for me in the documentary, or maybe not hard to relate to but hard to see because I wish I had that kind of validation, access to knowledge, and support. Knowing what's wrong and what it means allows you to get on with your life, whatever that looks like, and have the understanding and support of those around you. And maybe that's what allows you to laugh at it - how can you laugh at something with no name or face?
I don't know if Sickboy podcast has delved into the un(der)diagnosed, but if not I hope it's something they'll cover eventually. Anyway, watch it and let me know what you think!
Till next time...