That seems a little ridiculous, right? Who on earth would be disappointed they don’t have a horrible deadly disease?
If you suffer from chronic illnesses, you probably will relate to this post. If you don’t, then it’s time to buckle up and learn a little what it’s like to deal with a chronic illness from the medical side of things.
I have fibromyalgia. It’s the disease too many doctors still roll their eyes at, the one that your mom’s brother’s sister-in-law’s nephew’s cousin had and magically cured through the power of [insert weird alternative treatment here], the one that suddenly became way more known (and famous) when Lady Gaga started canceling shows because of it.
It’s the f-word of the medical community because nobody wants to treat it.
Your primary care doctor sends you to a specialist and the specialist sends you back because they don’t specialize in Fibromyalgia. In fact, practically no one does. In the whole of America, there are maybe 10 and I am being generous. The only one I am aware of is Dr. Ginerva Liptan in Portland, Oregon who costs six hundred dollars for the first appointment and they don’t take insurance. (Not to mention she only takes patients who live 4 hours or less from Portland)
I’ve been through the whole “primary care doctor sends you to specialist and they send you back” fiasco four times now. That’s with three primary care doctors, four rheumatologists (one twice), and one neurologist. Getting any of them to treat my fibromyalgia was like forcing a baby to take a nap when they don’t want to (they usually give in eventually, but it takes so much fighting and energy that you want to tear your hair out and scream, “Is this even worth the effort?”).
One rheumatologist told me I was a “sitting duck” for a blood clot and I should “probably take blood thinners if I get on a plane.” One tried exactly one medicine and when it didn’t work, she said she didn’t know what else to try. One did absolutely no blood tests or scans, did a physical, told me to “exercise, eat well, and rest” (which no one with fibro has ever tried that before).
So on the fourth of February, you can imagine my trepidation as I packed my two-month-old into the car for the four-hour journey to Portland to see another rheumatologist.
Why do they keep sending me to rheumatologists? Because I have tested for a mildly high rheumatoid factor three times.
Apparently, this could mean a multiple of things; I might have RA, I might develop it in the future, I might have a different autoimmune disorder, I might have a family member with RA, or I just might have a randomly slightly high rheumatoid factor.
We finally made it to the rheumatologist. Luckily, the baby slept the whole way. We were nervous but trying to be optimistic. I had a list of questions like “how do you decide on treatments? How can I get more rest while I am a breastfeeding mom? What is the newest medical news on fibro?” They called us back and we went through the typical list of questions. What are your symptoms? When did your symptoms start? How much pain are you in right now? Then they do the physical check over which is a series of “does this hurt? Yes.” And “push forward. Pull back. Squeeze my fingers.”
And then we got to the end.
“You 100% do not have RA or Lupus. You definitely do have fibromyalgia.”
And with those words, I should have felt relief. I should have smiled at the doctor and said, “thank you so much! I’m so glad I don’t have to drive another 8 hours to visit you again and that I don’t have a disease which makes my body attack and destroy itself.”
But I didn’t. I wasn’t relieved. I was disappointed.
“It’s good. Fibromyalgia doesn’t attack your internal organs,” she said, trying to comfort me. “Fibromyalgia isn’t going to kill you” is what she meant.
All I wanted to say was “did you know the leading cause of death for those with Fibromyalgia is suicide? Did you know about 40% of those with Fibro are alcoholics? So thank God it won’t kill me.”
And that was the end of the visit. She said she may be able to refer me to a pain clinic (another 8-hour drive to do what exactly?). They took some blood. They sent us on our way, back on the road to drive 4 hours home through Portland rush hour traffic.
One day I hope I can see a doctor who actually knows more about my disease than I do. One day I hope that more research will be available to identify a cause and help find solutions. One day I hope I don’t have to do this all again with a new doctor, or God forbid, do it with my daughter because she has developed it.
So yes, I am disappointed I don’t have a disease that might kill me, but has reliable treatments that improve patients’ lives. Instead, I have a debilitating chronic illness that won’t physically kill me (that we know) which no one wants to treat or knows how to.
If you know someone with a chronic illness, give them a hug. Maybe even volunteer to go to their next doctor’s appointment with them. We all get so tired of fighting with our doctors; it can be nice to have someone fight for us.