If you’re like me you have heard people in the circuit say, “You have to be your own advocate!” when talking about finding doctors who will listen to you and actually try to resolve whatever issues you have going. I know as a woman this is sometimes an impossible task. Actually when I started my long venture into ill-health I was only entering my teens and for all those years I am pretty sure I was just labelled as “emotionally troubled” and written off even though this is not even remotely close to what was actually going on. I get it. It’s infuriating to be told it’s all in your head, or you’re a hypochondriac, or exaggerating, when your life is at a standstill. I also understand that when you’re in pain you’re not really you. You’re not as happy, not as patient, and you have less mental energy to spare.
So the common advice to this predicament is to go doctor shopping. Find someone that will listen, they say. Well, I know how hard that can be, especially when you’re shackled by insurance to one small area in order to get coverage. What if you have exhausted all options? It’s a hard one. And I never give people shit for giving up or taking a break because that’s what I did for fifteen years and guess what? I needed that break as much as my doctors did!
I’ve only recently stepped back into these tumultuous waters and I must say that so far my journey has been much more positive. I haven’t been awarded with any diagnoses as of yet but at least I have people listening to me which makes me wonder what had changed. And that’s why I am writing this article now because I found I had become my own advocate but not in the ways everyone was suggesting. I wasn’t dogmatically knocking on clinic and hospital doors trying to find the one, er, that is the one doctor that’d take my grievances seriously. Instead of expecting the world to cater to me I changed myself to better cater to it.
I realize the rest of this article is going to sound sexist as shit and it probably is but the cold sad truth of it is that the world is misogynistic and sometimes to get what we need we have to just fucking admit that and play ball for a few minutes.
Back in those early years I wasn’t just a teenage girl (which is a terrifying prospect to male doctors, let me tell you) but I was also a very socially awkward one. I didn’t get along with people too well, at least not ones I didn’t already know, and I hated talking. Talking seemed to just lead to trouble so I was near mute. I had few friends, OK one who was frequently pretty shitty, and having already dealt with a crushing world I wasn’t apt to smiling. I joked a lot but my humor was dark and said with a deadpan expression which seemed to make people who didn’t get it (like almost all my doctors) real nervous. On one patient file it was written I had a “flattened affect” and on all the rest it merely stated I suffered from depression – which to this day offends me greatly because I never complained of depression. In fact when asked I flatly denied it. Why? Because if at any point I was depressed it was because I was physically ill and that was getting to me not the other fucking way ’round! But I digress. Suffice to say I was a patient no one seemed to want to see – I was a mystery and I made people uncomfortable.
Which brings to me to what changed. I was always one of those people that believed if you didn’t feel like smiling you shouldn’t and so I never really did. I had resting bitch face permanently etched onto my skull for 31 years. And then… then I realized how great it was to smile and I couldn’t stop. My health issues had not changed, in fact, if anything they had gotten worse. My life was still in shambles, I was still a wreck in more ways than not but having survived first sweet success and then total ruin again I was ready to change my life hardcore. I learned in many ways to be independent – I learned to drive, got my license, and on good days I went off exploring. I went throughout all of New England and I began to change. I began to feel confident in myself. I learned it was OK to be me, something I had been repeatedly told by society not to be. I was too “weird.”
With my newly found confidence I began to show it – I dyed my hair neon orange, I started dressing with all the colors and patterns that made me happy and because I was happy I smiled. A lot. To everyone. And through this I learned to make almost everything negative in my life positive. No longer did I say things like, “My body is fucking killing me” even when it was. Instead I’d say, “Just another day. My body is still kicking the crap out of me but I’ve had worse and I’ll be fine after a stretch. Talk to you all when I come back to my senses!” or “There’s nothing that makes me more grateful than the day after a migraine. Feeling GREAT, who’s with me?”
And funny enough I stopped being such a pariah. People seemed happy to see me. Genuinely so. And it wasn’t that their concern was any less it was just that I packaged all the negative aspects of my life in little bite size bundles. It wasn’t intentional. I wasn’t being purposefully manipulative but I found it also worked at hospitals and clinics with the nurses, clinicians, and doctors. Often I would note how difficult their job must be (especially to nurses who indeed have to deal with a lot) and then I would try to connect with them on some level. Sometimes this was asking the phlebotomist what on earth got them into the big bad world of blood drawing, other times it was cracking a joke with a wink and a nod to make it obvious and not, you know, unnerving. With my new charisma I found I got people involved in my struggle a lot easier. I may not have found answers yet but at least I seem to have found people willing to see if they could try and figure it out. That’s a lot more than I can say of the last time I tried!
I realize as a woman I have it rougher as a patient. I also realize there are people out there who have it even rougher than I do like women of color or trangender individuals. It shouldn’t be this way. All patients should be treated with the equal amount of patience and respect but since that’s not happening we as patients need to be super proactive and doctors… well you could learn a lot too so please be open to listening. To ALL of us not just the few you’re comfortable around. We are, after all, all human.
**All photos taken by myself Theophanes Avery**