My Response to Those Whose Concern for My Fibromyalgia Shows Up as Frustration
In the last 10 years that I have been living with fibromyalgia, I can positively say that I have heard/seen the gamut of reactions about my life with pain… disbelief, shock, encouragement, concern, feeling of being resigned, anger, frustration and finally impatience. The frustration shows up as a borderline rude question: “Will you ever say that you are without pain?” or “Will you ever get better?”
The answers in my mind range from, “Gee, why yes, as soon as they find a cure for it” to a mental flip off/showing them the bird, but because I know the intent behind this question, I either say that I have to live with it or make a joke out of it — that fibromyalgia and my life are two parallel but ever-present tracks in my life and I am in the middle of it. Sometimes I just flat-out lie and say I am OK, when I am actually not. And I come out of the conversation feeling hurt and in more pain than before.
I know that you are genuinely concerned about my health and feel bad that I am in pain every day… you know what, I appreciate and am thankful for your concern. But when my answer is not what you expected, your concern turns into something I don’t deserve. Remember these things when I say I am fine, or it’s pain as usual:
1. It means that I am managing my pain the best way I know.
Not everyone chooses to take prescription meds for their pain because of several reasons. I was on a cocktail of them until I realized that they were doing me more harm than good and hence I quit all of them cold-turkey. Now apart from a regular painkiller here and there, I don’t take any prescription meds and hence can feel the full-blown effects of fibromyalgia pain. Imagine any pain you were in, say you stubbed your toe and it is throbbing. The throbbing might last for a couple of hours max. Now imagine incessant throbbing, tingling, nerve pain, stiffness, burning and much more all over your body, all the time and multiply it by 100 times or 1,000 — that’s what I feel. But I am OK with feeling this pain as it is a choice I made to be fully coherent and not be the zombie these meds were turning me into. If you can’t understand my reasons, then please don’t question it and tell me it is my fault that I am in pain.
2. It means that I am actually struggling with it but putting on what passes as a cheerful and brave front.
Chronic fibromyalgia pain is a real pain in the you-know-where and when it is visited by its old friends, migraines and depression, it gets even more difficult to deal with it all. When when you are in fact not only experiencing overall body pain but also having a migraine attack and feeling depressed, things can get out of control real fast. But when you have duties to fulfill, you recognize your symptoms for what they are, keep an eye on it like an outsider and get on with your life doing the best you can. And the best might be just getting through the basics today, to going all out tomorrow. It means I might never be healthy, but that is not going to get in my way of being happy and at peace
3. It means I am taking it one day at a time and just because I did something yesterday doesn’t mean I can do it today.
This is the one thing that most people have trouble believing. People have come up to me and said: “But I saw you yesterday in XYZ,” or “You celebrated ABC last month but now you are saying you cannot do DEF,” or something similar. Well, sometimes I end up pushing myself or not pacing and I pay the price and sometimes I chose to sit out so I don’t pay the price. It all comes down to the choice of whether you want to do something today that you end up in bed or worse get a flare-up for the next week or so, or sit it out so you can carry on with those daily activities — lunches packed, homework checked — even if they are routine and seem drab but are absolutely necessary.
4. It means that I know you are impatient and view my pain as an annoyance and as something I got because of something I did.
If I had put away a quarter for every time I heard that I am “imagining it,” or I “should keep myself so occupied that I forget it,” or I am “not active enough hence I am in pain,” or I am “strong, that’s why God has given me this,” and so on and so forth, I would actually have a good amount to pay for a year’s tuition of my master’s degree. Would you ever walk up to someone with life-threatening illnesses or serious injuries and ask them the questions you ask me in a frustrated and impatient tone? No, of course not, because you can see it and know that the person is either going to be cured or not and in your eyes, you can’t put me in either box so you might think I am imagining it and not doing enough to get better. I know I am in limbo with my condition and I know it is difficult for you to see me in pain, but when your expression of concern shows up as anger, or worse, frustration, it not only hurts me, it majorly pisses me off because in addition to dealing with my pain, I now have to make sure that I sugarcoat the truth just so you think I am feeling all right, when in reality I am working really hard to get through each day.
And do stop right there when you tell me that God only tests those who are strong? I firmly believe that God is not sitting up there, wherever that is, with a spreadsheet of things to hand out to the strongest.
Like my high school teacher told our class once: “If you don’t have anything good to say, just zip it.” You may think your words are comforting but they are anything but, so please spare me your worldly knowledge.
5. It means the pain is here to stay but it does not define who I am.
Living with pain for more than 10 years is a lifestyle change. I plan ahead to the smallest detail possible, knowing in the back of my mind that I might have to cancel or not be a part of it at the last minute. The planning helps me identify any possible hurdles, alternatives and look at every activity as a milestone. It helps me be in touch with the person I was and still am, highlighting those things I cherish and those that are unnecessary and helped me cut off all the unnecessary baggage — both emotionally and physically.
Remember every person you see with an invisible illness is actually fighting with a smile — fighting to fall asleep when they are in fact wide awake, fighting to stay asleep when the pain wakes them up every couple of hours, fighting to wake up and get on with their day, fighting the pain every step of their way and finally fighting the most important fight: being their own advocates and creating awareness when all they want is to have a single day without pain. Because that’s who they are — warriors fighting their own battle and looking for just a bit of understanding and kindness.
This blog was originally published on LGV Blogs.