Every day we see people and we ask “how are you?” There are days when I really want to answer, “right now I am in so much pain that my clothes are hurting me, and my hair is burning my scalp, I didn’t sleep last night and my pain medications are not working.” But how do I actually answer? I say I am fine, because the world at large really doesn’t deal well with disabilities they cannot see. “But you don’t look sick” is something that those of us with invisible disabilities hear a lot, and unfortunately that leads people to think we are overstating our complaints. But rest assured, our pain is very real – and in my case is caused by Fibromyalgia, a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues.

May 10th is officially Fibromyalgia Awareness Day, but I am aware of Fibromyalgia every day. I don’t need a special day to stop and think about this disorder from which I suffer. It’s there when I go to sleep (if I sleep) and when I wake up in the morning. Every day. All year.

I was first diagnosed three years ago, at the age of 41. And while it was great to finally be able to put a name to the pain that had invaded my life, I refused to let it pull me down. From what I understand, and there really haven’t been enough studies done, it’s sometimes triggered by trauma or stress, sometimes it just develops. Fibro basically amplifies pain and changes how one’s body processes pain signals. There are only a few medications that work for fibro, and they are not effective for all sufferers.

I am a wife, a mom, and a full-time paralegal; most people in my life are not even aware I suffer from this debilitating syndrome. Because, when you look at me, I look fine. I take pains (literally) every day to get dressed nicely, to do my hair, put on make-up, and present a “normal” face to the world. I am not the type to complain about every ache and pain. I am the sort of person who pushes through everything – no matter the personal cost. I always end up in more pain because I refues to stop myself from doing something. I am always afraid of being judged as “less than” because I have fibro.

There are days that walking from the parking lot to and from the store to buy groceries is a challenge, especially after a long day at work pretending to be able-bodied and physically capable. I am entitled to a disabled sticker for my car. But I have yet to put in the paperwork. Why? The fear of getting the stink-eye from other shoppers as I get out of my car in the disabled parking bay. I’d rather shuffle slowly across the parking lot than be judged by others for what they cannot see. Maybe it sounds ridiculous, but there is a part of me that’s embarrassed that I don’t look how I feel. If others could see my pain, if they could understand how I suffer constantly just by looking at me, I feel I would be treated differently.

I used to be a classic overachiever, a perfectionist. “Good enough” was never a part of my vocabulary. But now I have had to incorporate “good enough” into everything I do (other than my job – because there I need excellence and detailed accuracy). If I have the energy to cook dinner, I will cook double so that there is food for the next night because to have the strength to cook two days in a row is unusual for me. But if we have to order in pizza, or the kids have to make omelettes, well, they’re not starving, so that’s ok. I am blessed to have a husband who pitches in a lot without complaint, and who reminds me often that it’s ok to say no to plans, that people will still love me even if I can’t make it to their daughter’s wedding / son’s bar mitzvah / 5th birthday party. For holidays I used to cook up a veritable storm – now, if I cook, it’s scaled back. But I have learned that no one will complain that there are only two side dishes instead of eight.

By nature I am a positive person. I like to smile and laugh and make people feel happy when they are with me. But fibro can bring with it anxiety and depression – being in pain for long periods of time can have that effect, even on a person with the sunniest disposition. I struggle with keeping my positivity. I try hard not to complain or whine. I talk with those who get it, fellow sufferers, health professionals etc. I have learned that it is ok to ask for help, and that I need to specify what help I need when, and be proactive about getting it. I have also learned that occasionally it’s ok to shut the world out, crawl into bed, turn on my favorite movie on repeat and not move for hours until it doesn’t hurt to breathe anymore.

What do people with invisible illnesses want? For me, I want you to be there for me, support me, and accept me, limitations and all. Don’t label us as whiners or quitters or bad friends. Instead of being upset that I say no to going out, come over in your jammies and watch a movie with me. Bring supper. Bring wine. I don’t need you to fix me; I need you to just be with me.

 

Hadassah Sabo Milner is a coffee-drinking, sleep-deprived, Welsh-born New York mom of four sons. She has a blog and writes occasionally for the Times of Israel. You can follow her on Facebook.
Photo by Alexandra Wren Photography