I have received many comments and advice about my pain under the guise of well-meaning concern. So this is my response, a kind of plea to those who may or may not get what people with invisible illnesses are going through.
My younger son Vishruth had some kind of swelling under his eye and I took him to the doctor to check it out. My most recent flare-up was in my temporomandibular joint (TMJ), and my therapist had taped my jaw joint using bright pink Kinesio tape. Obviously, the sight of someone walking around with bright pink tape on her jaw is bound to attract attention. So the doctor who attended to Vishruth asked me about it. I told him I have fibromyalgia and I get flare-ups in every part of my body, and this time it is in my TMJ area; hence, my therapist taped it to contain the inflammation. Were you able to spot a joke hidden in my explanation? I didn’t think so, either. So when the doctor laughed and said, “That’s hilarious,” I was shell-shocked.
He is actually a very good doctor and does not prescribe unnecessary medications. I managed to recover and said, “Bright pink tape instead of the regular, drab white one does look hilarious.” I collected Vishruth’s prescription and came back home, obviously disappointed. I agree the doctor might not know everything (he is a human being, after all) and maybe he is not aware of fibromyalgia or even taping in physiotherapy. Maybe it is not as prevalent in India as it is abroad. I have used taping and have also seen it used extensively when I trained for and completed the Nike Women’s Marathon in 2007. It was not the lack of awareness that bothered me, but the sheer insensitivity of his comment.
I have found that people are supportive of illnesses they can see, like a fracture, flu or cold, or a life-threatening condition. But for the in-betweens like me, the ones who have chronic illnesses but look all right from outside, they are always ready — ready to pass judgment, ready to find fault, ready to offer solutions. Here is a small list of what I have heard over the years about my illness:
- “You got fibromyalgia because you are not exercising. You are doing ___, you are not doing ___.”
- “You got fibromyalgia because you had an epidural during labor.”
- “You got fibromyalgia because you had a procedure.”
- “You must be imagining you are in pain. No one can be in pain all the time. It’s in your head, you are hallucinating.”
- “You should stop thinking about the pain, as thinking about it and making a big deal about it is not going to help you. Instead, just put it out of your mind and divert yourself.”
- “I know someone who knows someone who practices hypnosis or does some kind of magic and has cured cancer, diabetes and every other disease. They can cure you.”
I get it. People do it because they are concerned. They are worried and cannot understand how someone who looks healthy, is able to manage their chores and daily activities, and has some semblance of a social life is not getting better. Maybe they think I am not trying hard to get better, or maybe I am not getting better according to their schedule.
I did yoga and exercised regularly, but I was diagnosed with an arrhythmia and later a slipped disk and had to stop yoga. I saw a cardiologist, a neurologist, an orthopedist and several other doctors for all my individual symptoms, but no one could provide me with any relief. I even tried Ayurveda medicine, and it did not work out for me.
When I met a final doctor, based on all my previous experiences with other doctors who did not believe me, I did not even tell him about my fibromyalgia condition. He examined me and promptly noted that I, indeed, have fibromyalgia. All the comments from my previous doctors had affected me so much that I asked him several times whether I was hallucinating or imagining that I was in pain. He said, “Fibromyalgia pain is very real and can be excruciating. In your situation, even though you were diagnosed in 2008, you have not received any kind of treatment or continuous medications, so your fibromyalgia is chronic. It will take some time and a lot of patience to bring it under control.”
My symptoms are not consistent. They vary every single day. I have stopped working now because the pain became too much to bear, and I was unable to spend any kind of time with my husband and the kids. I became someone I did not recognize. I started seeing a cognitive behavioral therapist, tackled one task at a time and sometimes pushed myself to do more than I could handle, only to be hit with a massive flare-up or a series of small flare-ups. But I am trying hard to motivate myself, get back up again and again after every fall, not give up hope, and to count my blessings and not the burdens. I am working very hard to build up my resistance and strength — I have moved up from running a 1K to a 2K and now a 5K. I am doing all I can to get better, but it is on my schedule, not someone else’s.
Like I said, I really do get where you are coming from. I get your concern, but are you able to get that I smile and move on with my life because I choose to be like that — I choose to hide the pain and the grimace on my face and replace it with a smile? I am not asking for your empathy or understanding even. All I ask is that you don’t judge based on what you see. People living with invisible illnesses could do without the insensitive remarks.