By: Caitlin Porter
Despite years of frequenting psychiatrists’ and psychologists’ offices, I never really felt like I was “crazy” until I tried to get help for my chronic pain.
It’s been about 16 months since the journey really began. It started with my primary doctor, who sent me for chest scans, heart scans, a gallbladder study, and a head scan. She was thorough, but my results showed nothing. At that point I was well on my way to a fibromyalgia diagnosis, just because nothing else fit.
Still, the lack of clarity and persistence of my symptoms got me an appointment with neurologist, since multiple sclerosis was on my doctor’s list of potential causes for my pain, weakness, and exhaustion. When the MRIs I was sent for showed nothing but a benign cyst, I was equal parts relieved and burned out. The constant stream of appointments was getting expensive and affecting my work life, so I took a break from doctors — but not from Google.
For what it’s worth, the internet seemed to agree with my primary doctor and all searches pointed to fibromyalgia. A lot of other opinions came with that confirmation, though, and most of them can be summarized like this: “Fibromyalgia isn’t real and people who claim it is are just fat, whiny women who need to do some yoga and get over it.” And it wasn’t just faceless strangers saying things like that! My OB/GYN told me to never let any doctor settle on that diagnosis, the neurologist told me to talk to my psychiatrist, and my psychiatrist told me it was an “old woman’s disease” and I should try light exercise to see if that would help. I was starting to wonder if maybe I was just weak or a hypochondriac after all.
Fibro is tricky because at this time there are no blood tests or scans that definitively confirm it. Even with the classic painful trigger points and countless lists of symptoms that read like they could be my daily journal, a fibromyalgia diagnosis never feels 100 percent, and room to wonder means room for anxiety and self-doubt.
I found myself scouring the internet again a few days ago, trying to find proof that someone out there could relate to being unimaginably tired but too sore to sleep, and I came across a whole page of comments about the mental weakness and overall terrible character of a person who carries a fibromyalgia diagnosis. Their words stuck with me for the whole next day. I got caught in a bit of a downward spiral. (Remember that so many people think my pain is made up, get anxious, get depressed…and repeat.)
I don’t want to disown my diagnosis and discredit everyone who lives with the same struggles I do, but sometimes I want to distance myself from fibromyalgia. I try to remind myself daily that if I’m feeling it, it’s real, and that’s all that really matters, but it would be nice to know that the entire medical community at least agrees that I’m not making this up. Talk about being figuratively kicked when you’re already feeling down, right? I just want to be able to be honest with the people who might be able to help me without fear of being perceived negatively.
I’m hurting basically all the time. Sometimes it’s easy to ignore, and sometimes it brings me to tears. I’m absolutely exhausted if my day involves more than one activity, and sometimes also when I don’t leave my apartment at all. I keep my life in a delicate balance of doing enough to count as “normal” but still listening to my body. I don’t like it, but I can handle it. What I don’t think I can bear is having aching bones and burning muscles, and then wondering if maybe I only feel that way because I need an attitude adjustment.
I’m not trying to say that positive thinking is bad. In fact, lately my whole life feels like an optimist’s boot camp, where I’m constantly in training to see the bright side by default. I just need some faith and understanding from the people who matter most: the doctors who can help me find relief, my friends, and my family. The internet trolls? They can think whatever they want to.