How to do deal with ‘seeing is believing’

We all know that one of the hardest things about having an invisible illness is trying to explain it to others, and have them believe you. I consider myself to be unbelievably lucky because I am often stunned by the number of people suffering from Fibromyalgia or ME who’s own loved ones don’t believe them. I know of people who’s husbands think they’re lying, who’s children are bored of hearing about it, and who’s work colleagues think they’re trying to blag days off work. Now the work colleagues and the kids you can kind of understand but your husband thinks your lying? WHAT? So yes, I feel one hundred percent truly blessed to have a partner and a family that not only believe me, but that go out of their way to support me try and make my life that little bit easier.


However, all that said, I can’t really blame people for struggling to get their heads around something they can’t see. In a world where we require justification and evidence for everything, is it really a surprise that we’re subjected to the suspicion of others? Innocent until proven guilty, healthy until proven unhealthy.

But things got a little bit strange for me this weekend. On Friday I was weaker than usual, my legs were shaking as I walked and my back seemed like it was struggling to keep me upright. On Saturday morning I was getting dressed when my boyfriend said, “What’s that on your back?” I looked in the mirror and he examined it and my lower back seemed to be covered in small bruises. When I pressed them, it didn’t hurt like a normal bruise does, but I couldn’t help being a bit concerned. My friend is a nurse and was staying for the weekend, so I got her to check them out. She said they weren’t bruises, but more like mottled skin marks. I got dressed and went on with my day, but each time I was by a mirror I checked them to see if they’d changed at all. They hadn’t.

My back on Saturday morning.
My back on Saturday morning.

Today I sat down with Google and searched for “Fibromyalgia mottled skin” and lo and behold, mottled skin is yet another symptom. This Fibromyalgia Symptoms website said, “the skin of fibromyalgia sufferers often begins to change color, appearance, or tone. Dark spots can appear all over the body, particularly on the inside of the forearms and thighs. Exposure to the sun can darken these spots or causes them to become red and swollen.” So there you have it; a week in the sun caused big dark spots on my skin.

What I really found interesting about this is; I am a person that understands the battles of dealing with an invisible illness, and yet even I was more caring and concerned towards myself and my pain when I could see a mark on my skin. All day I was thinking that I could have something really wrong with me, as if Fibromyalgia isn’t really something worthy of concern. I went to bed checking the marks to see if anything had changed, and I was still thinking about them when I woke up today. Why don’t I have this much worry about myself when it comes to invisible pain? Well, you could argue that it’s because I’m used to my common pain and symptoms, so I know what’s usual and what’s unusual. This was unusual and therefore deserved more worry. You’re right; however, I also know that whenever a new unusual invisible symptom appears, it never makes me as concerned as these visible marks made me.

I know it’s difficult for all of us to understand, whether we’re the patient or the friends and family of patients, but we as a society have to get better at valuing and learning and caring about what we can’t see and what we can’t understand. We may not have evidence and explanations, but that doesn’t mean that it’s not real. Whether it’s physical or mental, illness related or not, we’re all coping with and experiencing things that others can’t see. We need to try and be better at appreciating those who believe.


2 comments on “How to do deal with ‘seeing is believing’

  1. I think we are all this way. How easy is it for us to just excuse any pain we have as “just Fibromyalgia”. But, when it’s visible we worry that maybe it’s more, because we expect Fibro to be invisible.

  2. I totally agree with both of you!

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