Having an “Invisible Illness”

I have fibromyalgia. To many people, I don’t ‘look sick’. The truth of the matter is that some days my pain is so severe, I just want to scream and cry. It hurts so much.

When women especially – sorry, men, but I have more experience with woman especially since I am one myself – have invisible illnesses, they often feel invisible and that their needs are ignored, misinterpreted and poorly understood. I am here to say that we are not crazy. It’s not all in our heads.

Our pain is real and it’s debilitating. Some days it’s a struggle to get out bed and work. I am a mental health coach and assist people daily. Some of the women I work with are very ill, but they hold it in. They don’t complain. They’d rather that people didn’t know about their pain. They don’t talk about it, but it’s there all the time.

It’s real and really difficult to cope with. Depression goes hand in hand with chronic pain. That just compounds matters, heaping the mental on the physical. Personally, I know that when my emotional pain gets too strong, my body feels it. This somatic response is not unusual. The body and the mind are solidly interconnected. When one hurts, the other usually follows suit.

If I had a dollar for all the times people told me, “you don’t look sick” and I felt sick, I’d have quite a bit of a nest egg by now. The thing that hurts me the most, however, is that my youngest child also has fibromyalgia. As a 19 year old, they work very hard to do ‘normal things’ and lead a ‘normal life’, but they know that sometimes their body won’t cooperate with them. They can’t do all the things they’d like to.

I was a bit older when I was diagnosed with fibromyalgia so I don’t fully understand my child’s unique challenges. I can sympathize but I cannot say I’ve walked a mile in their shoes. I can say, however, that I understand that when they say they’re in pain, they’re in pain. I have no question about the veracity of that statement.

But I know that no everyone does and that annoys me beyond belief. My child is not ‘lazy’ or ‘unmotivated’ or ‘depressed’ – although they also struggle with bipolar depression like me. They are in pain and trying to take good care of themselves.

I call that extreme self-care or survival mode, when you do every thing you can to just get by. The bare minimum. Some days my bare minimum is meeting with clients, exercising, eating right and resting whenever I can find the time.
How survival mode looks for people varies. Some can’t even do what I can. I implore you, my reader, if you don’t suffer from an invisible illness, to not ‘guess’ that someone is doing well just because she looks well. I suggest that you give people grace and compassion no matter what the situation looks like. I encourage my invisible illness warriors to remind themselves that they are doing the best they can and:

WHAT OTHER PEOPLE SAY AND DO SAYS MORE ABOUT THEM THAN IT DOES ABOUT YOU!

 

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