I think many people with fibromyalgia have heard the following statements at one point or another:
“Oh, you have the catch-all disease.”
“Fibromyalgia isn’t a real disease, it’s what doctors tell you when they have no idea what you have.”
“I think fibromyalgia is just depression that shows up as pain.”
“I don’t believe in fibromyalgia.”
“You don’t look like you’re in pain.”
As a nurse, I used to think all of the above. I never said it out loud to anyone who had this illness, but the thoughts were there, in my ignorant head.
I’m unsure on if people realize how rude these statements are, or if they truly do not care how they can make someone feel. When you say, “Fibromyalgia isn’t real,” you are saying that the pain I feel isn’t real… and I know that it is. It’s real when I am having an unbearable flare-up, and my husband has to help me to bed. It’s real when I am attempting to stay at work for the day when I can barely concentrate because my pain is all consuming.
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If you have never been chronically ill, I think it’s really easy to make these statements. You have never had to experience these struggles. And while I understand how hard it is for you to “get it” because there are no lab results, or imaging studies that I can show you to prove that I have this diagnosis… I also feel that you lack compassion.
How can you be so opinionated on something you have never had to struggle with?
I didn’t ask for this. I went from running 10 mile races, to barely being able to exercise at all. I have never had to put limits on what I allow myself to do until now. I took my old life, my old body, for granted. But still, I go to work, and I try to stay positive as much as possible, because I refuse to allow this diagnosis or the stigma associated with it define me.
So my advice, is this: if you know someone with chronic pain, be compassionate. Be human. Enjoy and appreciate your healthy, pain-free body, you never know when this could be you. (I hope it never is.)
What It Means to Be Chronically Ill
I am not that chronically ill person who “never complained.”
I am not that chronically ill person who is always good at pushing through.
But I learned one thing – to learn to be happy when I’m in pain. (Or dizzy, or nauseous, or whatever my primary symptom is.)
For the first three months of my chronic illness journey, I was a ray of sunshine. I saw this as a journey with an end date somewhere in close future, where a surgery or a treatment would “cure” me and I would close this chapter in my life… only to bring it back on college essays about bravery, and to do fundraiser once a year or so to help other that were left struggling.
That didn’t happen.
I was about five months in and realizing more and more everyday that this will not be an open and shut case. I began to become moody and angry. I was depressed and felt horrific. But then I went to the Mayo Clinic.
When I went to the Mayo Clinic, I was expecting a cure in the form of a medicine or a surgery. However, through the many days of road tripping, meeting new people, and exploring MedCity, I found a different type of cure. An emotional cure, that is. I learned I had to learn to be happy when I was pain.
Many of us are taught as children that sick means “sad.” For able-bodied people, this tends to be the case. But if live your life in pain, if you live by the “sick equals sad” philosophy, you will never be happy. I believe you must learn how to smile, laugh and have fun while you’re sore.
Of course, this doesn’t mean you don’t wake up sometimes and grieve the body you once had. This doesn’t mean that someday it’s too much and you want just cry. Go ahead and cry.
This means learning what you need to do to manage your pain. This means using a cane, walker or wheelchair for the day when you have sore days. This means cutting out the thing you don’t enjoy or the people that don’t make you happy, so you can live your life to the fullest. This means finding friends who are OK with with all that comes with your illness. This means hearing a lot of, “You must feel good today since you’re out,” and having to shrug it off. But it also means taking back your life so you’re not only surviving with chronic pain, but you’re living.