Fibromyalgia

As I sit in the slightly less intimidating but no more comfortable side chair in my doctor’s office, I find myself wondering: why did I have to get stuck with the chronic illness that no one seems to know how to really treat?

I tell this story to nearly everyone who asks because I need there to be something better than “speculation” about Fibromyalgia syndrome. Countless doctors visits, four trips to the hospitals—two in an ambulance—and many sleepless nights of pain later and that’s what I’m left with: a syndrome that even though over five million people have it, can’t be treated professionally with anything but pharmaceuticals that sometimes leave you worse off than you started. At first, I was happy that I wasn’t dying and that it wasn’t all in my head like doctors before had said.

Then I was angry, so, so angry. Everything I read, everything I was told made me realize that this pain, this bone-deep, relentless pain would constantly be lurking in the shadows for me. Like my depression, like my anxiety, I would have to fake a smile while I felt like someone was sticking red hot pins in my finger tips. I am lucky to have a high pain tolerance but many others who suffer don’t. Many can’t go a day without sobbing and feeling like they’ll never have a good day again. Many have very few good days at all. For me, I’m stuck with another invisible illness to which I constantly use the tried and true spoon theory to explain why I’m such a flake to teachers and new friends.

That’s not even why I’m angry though. I’m angry because this widespread chronic pain is still completely a mystery to doctors to the point where some will pretend it doesn’t exist (like Lyme disease! Don’t get me started on that one). Others throw addictive medications at you like candy in hopes that you leave them alone and stop asking so many questions so that they don’t have to admit the obvious: they haven’t got a clue.

So why isn’t there more research being done? From the few websites with answers, it’s said that over five million people have been diagnosed with the illness in the United States alone and most of those people are women. There is no test to officially diagnose the illness and because of this, science refers to it as a “syndrome” which is usually a place marker for an area of medicine that needs more research. The diagnosis is only made once every other possible issue is ruled out or addressed (leaving people like me with high medical bills and nothing but a long word to tell people when they ask us why we’re crying). There is no official known cause and no official known treatment. What I’m wondering is: why?

Is it a sexism thing? We know that menstrual medicine and research is still very underfunded and because of this women use birth control and sanitary products that actually could be harming them in a way unbeknownst to them. Fibromyalgia is mostly found in women but still can affect men. How many men are undiagnosed because, in this day and age, they are still told to “suck it up” when they’re in pain? So many unanswered questions. More research required.

Is it a liability thing? That doesn’t sound right, not when doctors constantly research nearly unheard of illnesses that could turn out to be something more.

Is it because the illness isn’t always visible? More horrendous looking illnesses are made public every day and researched just because they get noticed. Recently one of my favorite YouTubers raised money for a very rare disease saying that it looked horrifying and shocked him that it wasn’t more well known. Considering how famous that YouTuber is, there are probably millions of people talking about it now (I might be slightly bitter for mostly selfish purposes when it comes to that particular example). Still, anxiety, depression, and other mental illnesses are constantly being given new medications and new treatments that we know work. Research is thankfully strong for mental health and the stigma is slowly lifting. For this, I rejoice but wonder why fibromyalgia isn’t given the same treatment. Again, more research is needed.

Is it because it’s unknown? My experience with telling people my diagnosis is being given a sad but clueless look or being told that they understand because a relative, friend, or coworker has the illness. It’s definitely proven to be relatively common but it’s hit or miss in a doctor’s office. Often it’s even lumped together with other categories of diseases due to similar symptoms leaving people unsure of what kind of doctor to go to in the first place. Research is needed but very little widespread, reputable research is done.

Maybe this is the problem. Maybe we need to speak up for fibromyalgia and demand answers, real answers instead of accepting the fact that, as my rheumatologist cousin said, “You’re not dying but will probably die with this.” We need people to speak up for us and educate those who are misinformed. Support us. Talk to us. Validate our feelings. We need help, yes but more importantly, we need hope.

I need hope. I want to be able to sit in my doctor’s office and have confidence in the options given to me instead of wondering if I should just give up on modern medicine and smoke a joint.

As for those who are already there, stay safe my friends and pray for legalization.