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An Honest Look at the Loneliness of Invisible Illnesses

I have an invisible illness.  It means that most of the time while I am feeling awful on the inside and struggling with my health I look absolutely fine.  In fact, some might say I look good.  Invisible illnesses are natures attempt at irony.  In many ways, I am grateful that in the broad picture, I still look healthy enough to fool the people who look at me into thinking I’m fine.  I mean, who could really complain that they don’t look sick enough.  Yet, not looking as sick as I feel causes a lot of complicated issues for me to deal with too.

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Invisible illness makes me feel invisible.

This happens because of a few different dynamics that take place when you have an invisible illness.

First of all, because I look fine, I never get the validation or empathy that I need.  My autoimmune disease swept into my life and took over when I got sick.  I have to constantly live my life around what it is doing to me.  It is a HUGE part of my life. Yet, I find that most people in my life have no interest in understanding what is going on with me because it is not in front of their faces.  I am losing my hair but I am not walking around bald like a cancer patient where people walk up to me and share their experience with a loved ones cancer and tell me that I’m brave.  In fact, I have realized that if you ask some of my closest friends and family what was wrong with me, only a couple could actually answer.  This makes me feel so alone dealing with this.  It’s not that I need constant attention for being sick.  I don’t want my relationships built around that.  But when the people around me pretend it doesn’t exist either, it does something strange to me.  It takes the biggest battle of my life and turns my struggle invisible.  If my biggest struggle is invisible then are you actually seeing me?  I mean, really seeing me?  It is a pretty massive part of me that you can so easily ignore so has my invisible illness made me invisible too?

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It has changed me.  I hear people complain about this sometimes.  You’re not like you use to be, or you don’t go out anymore.  Well yes, learning I have an unforgiving disease that treats me cruelly when I don’t give it complete consideration does change a person. You know what else does?  Learning that you have a disease that will never go away, so stop asking me when I am going to feel better.  No, it won’t kill me but I will die from it. Can you wrap your head around what that does to a person?  I know I’ve changed but not because I wanted to.  I’ve changed because invisible illness changes you.

I can’t do things like I use to.  I simply cannot physically spend a day shopping with friends anymore.  It takes me days to physically recover from trying to live life the way I use to.  I know that is hard for you to understand because I look fine.  I also cannot go out to eat most of the time.  Food has become an enemy that I am constantly battling. No, I can’t find something to eat off of the menu because it is all cooked in, processed in, or made with stuff that makes me sick.  You don’t see it when I am in the bathroom later that day in agonizing pain so it is easy for you to think it doesn’t really happen.  You can only see that I turn down all the requests and eventually I become invisible.

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Invisible illness isolates you.  I spend a lot of time at home.  I mean a lot.  I can joke that I am a home-body but the truth is it is not all from choice.  I really don’t have the energy to be out most days.  This leads to a lot of time alone.  While it is true that I am by nature an introvert, and this isn’t usually difficult for me to deal with, it doesn’t change my yearning for someone to offer to hang out with me at home over a cup of tea once in a while.  You hardly can see my daily battle because I look fine, so how could you see that I need you to reach out to me in ways that I can manage sometimes?  If you can’t see how my invisible illness takes over my life and modifies it to suit its needs, then you stop doing things with me and I become invisible too.

So many times I have had to make adjustments when I am actually out so that I feel like an out-of-place weirdo.  Take for example when I go to the pool or park with my kids.  I am the mom who has to sit all alone outside of the fence in the shade because I am photosensitive.  So no, I don’t get to hang out and get to know others moms.  It’s not that I don’t want to, it’s that everything I do has to be filtered through the lens of my invisible illness.  So to that group of moms hanging out, planning more things to do together, I look like a stuck up mom that prefers sitting by myself rather than with them.  How could I possibly explain to a group of strangers that even though I look fine I actually have an incurable illness that forces me to live in the shade, wherever that may be.  So it would be great if the entire group of them could join me outside the fence on that little park bench?  It is situations like these that remind me how very lonely it is to have an invisible illness.

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Maybe, you are one of the few that have an excellent support group and all of the people you loved when you got sick stuck close by no matter what.  Maybe, like me, you’re life halted into the slow lane of autoimmune disease while everyone elses kept zooming past you.  I don’t know what its like for you, but I do know there are times when we all feel lonely.  The isolation having an invisible disease causes eventually reaches out to everyone at some point in time.

Sometimes people don’t understand that I am sick.  They see me hobbling from my car into the store in my slow arthritic way and assume I am belligerently slowing down the flow of traffic.  They see me keeping my children close to me when we are out and assume I am overprotective.  Little do they know I need them where I can lean on them to walk or to support me when I get a wave of dizzying nausea!  How many stories have I heard of people being harassed for wheelchair permits when they have invisible illnesses?  The list of ways people can respond negatively to us because they don’t see our illness is endless.  It makes me feel misunderstood and alone.

The hardest part of all when it comes to dealing with invisible illness is that if you would look at me, I mean really look at me and see me, you would see my invisible is not invisible at all.  I am 34 years old and my hands look like my grandmothers.  The skin on them is wrinkly and saggy with my veins protruding and red, swollen knuckles.  Look closely at my eyes and you will see my invisible illness there too.  They are usually puffy and swollen.  They stay a lovely shade of red because of the ravages to my moisture-producing glands.  Take a good look at my hair.  It is thinner and drier than you have ever known it to be.  I have patches of my scalp that show through unless I take the time to brush it just right.  You can see my invisible illness there.  Take a look at my figure.  I lost a ton of weight, fast.  If you would stop asking me what diet plan I did it on long enough, you could see my invisible illness there.  Take a look at the way I walk.  I can’t stand up completely straight when I rise.  Instead, I have to hobble forward hunched over with one slow shuffled step after another.  You can see my invisible illness there.  Look at my face.  The rash that periodically appears across my cheeks and nose should reveal that my invisible illness is not invisible.  Look at how my life has been transformed by the controlling master of pain.  Every time I can’t do something I use to you can see my invisible illness there.

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It is a cruel twist of fate that there are so many ways my invisible illness is announcing itself to the world and yet it still remains invisible.  If such an illness can be so obvious to anyone who would take a long enough look at me to gather the overt clues it leaves, then why is it invisible?  Maybe, they just don’t see me.  Maybe it’s not my illness that’s invisible but me.

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2 thoughts on “An Honest Look at the Loneliness of Invisible Illnesses”

  1. This is an amazing post. I can totally relate to chronic health problems having changed me. It isn’t fun having to deal with pain, fatigue and other symptoms. Then when people say I need to exercise more or not be in bed so much, I cringe. Hopping over from the Invisible Illness Week blog.

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    1. Hi Astrid, thank you for your kind words. First of all, I am currently in love with the name Astrid…so beautiful. It’s okay for us to be changed by what we are facing. We just need to accept those changes within ourselves and be our new best. I hear you when it comes to cringing over exercise. It is HARD to be motivated when everything hurts and your exhausted. I have found that tai chi is an excellent way to get my exercise without it being too strenuous for my health or cringe-worthy for my emotions! Check out my post on it if you get a chance. https://autoimmunemess.wordpress.com/2015/09/21/why-you-should-be-doing-tai-chi-if-you-have-an-autoimmune-disease/
      I wish you the best and if you ever need some encouragement or understanding stop on by again! 🙂

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