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When I Feel Invisible as Someone With Chronic Illness

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I want to talk about being invisible. As in having an invisible illness, where you can look perfectly fine on the outside but the inside is a completely different story. We are the people who live with conditions with names like fibromyalgia, arthritis, migraines, Ehlers-Danlos syndrome, autoimmune disorders, Sjogren’s syndrome, bipolar disorder, depression and/or other mental disorders… and the list goes on.

I have been living with fibromyalgia and osteoarthritis for over half my life now and I’m currently 56 years old. I have over 14 completely separate health issues, all of them invisible except for my brachydactyly, which is a shortening of my ring fingers and toes. To look at me, you would see a petite vibrant woman with a radiant smile and an outgoing engaging personality. Inside, I am in constant pain with joints that feel like they are trapped in a vise and muscles that are filled with concrete. I can’t stand for longer than 10 minutes without my lumbar spine being in agony, and my thoracic spine is covered in bone spurs that look like melted candle wax. I’ve already had a right total hip replacement and my left hip will need to be done soon. My right knee collapses at will with a shooting bolt of pain, and I’ve somehow messed up both my Achilles tendon on my left side and my rotator cuff on the right side. All this plus arthritis in every major joint in my body and the fibromyalgia to boot and my body is a mess. Oh, and I have Type 2 diabetes, gastroparesis, hypothyroidism and bipolar disorder. And those are just the major things.

When you have an invisible illness, it seems like you have to fight to have your illness be seen as “legitimate” compared to someone who uses a mobility aid like a wheelchair or a cane. Anything that physically shows you to have an incapacity makes it easier for others to show acceptance and tolerance of your limitations and abilities. When you look fine on the outside though, it’s just another battle to face. Heaven forbid you park in a disability parking space, even if you have the appropriate placard. The looks and the confrontations for not being “disabled enough” are frightening and you have to have a strong backbone to put up with the comments you might receive (not easy when your backbone is covered in bone spurs!) I remember being almost relieved when I started using a cane, because I knew I now looked “legitimate” and wouldn’t have an issue with anyone questioning me using the disability parking anymore.

Does anyone remember “The Picture Of Dorian Gray?” the novel about the man who stayed perpetually young, while his painting grew older and older? I think about invisible illness in a similar way. “A Picture of Dorian Pain” – where everything on the outside stays the same, but your insides deteriorate. It’s not pretty, but it’s the reality many of us face. It’s also hard to explain to people why you’re able to do certain things one day and not the next day – or do much of anything the next day. It takes so much energy to push through chronic pain, fatigue, depression etc. that a simple task today may render you too exhausted to do anything but move from bed to recliner the following day – that’s certainly the pattern in my life. Everything has to be planned out so carefully to make sure I’ll have the energy to do what needs to be done. Dealing with chores and household tasks are aggravating enough, never mind wanting to do something fun.

Here’s a post I wrote on Facebook back in August of 2011 that really captured how I was feeling about that subject:

This note is purely venting – no comments and/or replies are necessary, but I am completely and thoroughly peeved that my life is slowly being stripped of anything fun. Everything I do now is based on how I’m feeling, or how I might be feeling in a short period of time, and so on and so on. I’m peeved about having to cancel plans and I’m peeved that everyone can just go have fun whenever they want, and I’m peeved that even when I have my hip replacement surgery, it’s only going to “cure” a small portion of my health issues. I am worn out from trying to stay positive and if pain were a person right now, I’d kick it’s sorry @ss from here to Hell. *vent over* Carry on — nothing left to see here.

One of the things we invisibles often have to do is ration our energy to make sure we have enough to do everything we want to do in the course of the day. It’s called “pacing ourselves.” We want to do so many things; we want to be like we were before, having fun with our family and friends, doing spur of the moment activities, just because we can. We may look like we’re capable on the outside, but unfortunately, the Invisible Us makes it all so difficult.

I know this might sound like a big bunch of complaining, but really it’s just stating the facts of what many people with invisible illnesses experience. It’s a chance to educate others who are quick to judge when they see us looking “fine” on the outside – to help them understand what our insides are really like. We want to belong, we want to do things like before, we want to feel healthy and well and normal and good. Right now though, this is our reality. Please look beyond what you see. We’re still the same fabulous people we’ve always been, we just have a new reality now.

Until next time, remember — there is always hope.

Originally published: July 24, 2018
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