“We don’t have to talk about it, if you don’t want to,” he said gently, after asking me some questions about my health problems.
“It’s okay,” I answered. “Honestly, I…I kind of like talking about it. I often feel like I can’t, like I have to hide it. Being sick all the time is a normal part of my life. But talking about it can often come across as very negative, even if I don’t intend for it to be that way. So I tend to hide it, and not talk about, even when I want to.
“It took ten years just to get diagnosed. And most people either haven’t heard of Fibromyalgia, or don’t know what it encompasses. The only treatment nearly killed me, and when I saw a specialist she basically told me that there’s not much that can be done. Try to get good sleep. Eat well. Exercise. See a therapist to help cope with it.
“It’s estimated that over 5 million of people in the US alone suffer from Fibromyalgia. And yet, it’s only in the last handful of years that doctors have started accepting that Fibro is a real thing! This is why I talk about it so much on social media.
“People need to know that this exists. That it’s a real thing. A terrible thing. We need awareness for it; maybe if awareness is raised, someone will do something. Because right now, for countless people, there’s pretty much nothing that works.
“As much as I try not to think about it, sometimes this dark thought sneaks into my mind, especially when I’m having a really hard day…it was so hard to accept, and maybe I still haven’t fully accepted it…that this is my life. And as things currently stand in the medical field, this will always be my life.
“It’s terrible when the thought crosses my mind, that 50 years down the line, this will still be my life. It will never go away. I am always going to be sick.”
I want to raise awareness for Fibromyalgia. Because it is real. Because it is terrible. Because it is incurable.
Those of you who don’t know much about Fibro may be wondering what all it encompasses. The answer to that is complicated, because it varies so much from person to person.
My Fibro is pretty bad, and around the time of my diagnosis in 2015 I was severely ill.
I was admitted to the hospital twice in 5 days. At 5’6” (168cm) I weighed 97 pounds (44kg) and could barely walk. I couldn’t move my left arm (unbeknownst to me, this was from a dislocated rib). I was in such severe pain that I hadn’t slept in several days.
When I told the hospital that I had Fibromyalgia, their response was to say there was nothing they could do for me. They checked to see if my shoulder was dislocated, which it was not, then sent me home. They said to not come back unless things got worse. I was honestly afraid I’d be about dead by that point.
When I saw the specialist, I was armed with a list of my symptoms for her.
I explained that, except for the constant pain, symptoms tend to appear and disappear. When things are really bad, I’ll have more symptoms, and they’ll be more severe. When things aren’t so bad, there will be less symptoms, experienced at a milder severity.
The list of symptoms.
Pain. Severe pain. Everywhere. All the time.
Highly sensitive nerves / hypersensitivity to sensations of touch and pain
Memory problems (AKA brain fog, AKA Fibro fog)
Poor balance and coordination
Changes in vision
Digestive issues, like IBS
Random bouts of nausea
Delayed onset of sore muscles
Extremely painful menstruation
Sensitivity to temperature
Flares (when everything gets a lot worse for a period of time)
Flares caused by changes in weather
Worsened pain and stiffness in the mornings
Sensitivity to light and noise
After talking with the specialist and having a blood draw, I got the good news and the bad news.
“The good news,” she told me, “is that you don’t have Lupus or anything like that. The bad news is that you have Fibromyalgia.”
There was an intense feeling of relief and joy at finally having a diagnosis, after a decade of illness with no known cause. But the relief quickly turned sour, after realizing that the diagnosis would not change much. Now, I just had a label to share with people. One that usually has to be explained, as “Fibromyalgia” is not in most people’s vocabulary.
Things have significantly improved since that time. I did exactly what she told me to do; I worked on getting into good sleeping habits, I starting eating healthier, I started exercising more, and I saw a therapist.
During my recent time in Amsterdam, I was delighted to see my weight, a year and a half after the hospital stint, was at an all-time high of about 120lbs (55kg). For the most part, I am now able to live independently. Sometimes I still need help getting by, but not nearly as often.
I believe a huge part of the reason why I have improved so much is from sheer willpower. Being so sick for so long was, to say the least, highly traumatic. I knew that I never wanted to feel so low again. I would rather die. So I pushed myself to improve; I didn’t see any other choice.
I continue, to this day, to push myself. I hike – in the mountains, in deserts, on sandy beaches, and riverside trails. I have learned, through extensive trial and error, to know when I need to stop. Overdoing things, like exercise, can lead to terribly painful flares. But I’ve become an expert in pushing myself right up to that point – to right before I will trigger a flare.
Sometimes it will still happen. Sometimes flares are unavoidable. But for the most part, pushing myself to go beyond what I could do yesterday has done wonders to make me stronger, both physically and mentally.
When someone offers to carry my heavy camera bag up a 4-story staircase for me, I appreciate the offer, but I politely decline. Even if it means I’ll be a bit slower, and struggling to breathe, I want to do it myself. Because I know that, in the long run, these little struggles will make me stronger. They will make the big, painful struggles less frequent.
I believe that even if I will never be cured of this horrible disorder, I can always be better than I was before.
Improvement is always an option, even if a cure is not.