Fighting for Visibility With Invisible Illness
About the Author: Shelley is a chronic illness warrior that shares everything life and chronic illness-related on her instagram. From yummy recipes to adorable pictures of her cats to incredible captions on disability struggles, her page is a must-follow! You can find all of her awesome content over on her instagram here.
When we first meet a new person, we automatically assess them from the outside. What can I see that tells me something about this person? While we may not always be aware of it, there are plenty of us who start assuming things about a person based on their appearance, clothes, behavior, mannerisms, and speech. The most basic problem with this, at its core, is that we have no idea who someone is or what they have gone through. We don’t know their experiences, their struggles, their fears, or their pain. Yet sometimes we seem pretty confident that we can assess this from looking at the outside.
From the outside, I look like a “normally abled” 28 year-old woman. People are always surprised when they learn about my long-list of illnesses, and react with things like: “You’re too young!”, “That’s a shame,” and “Well your skin is so clear, you look healthy.” While some think that I could possibly be faking being sick, I’ve actually had to fake being well. When I came to work dressed up and with some makeup on, you didn’t see all the times I had to stop getting ready because I was doubled over in pain. You never saw all the tears I shed driving to work because I knew deep down that I should have stayed home.
In March, while recovering from major pelvic surgery, I was denied long-term disability benefits due to “lack of physical examinations” and because I was deemed able to work postoperatively – despite a long list of complications and other issues. I’ve never felt so invisible in my life than the moment I was basically told I wasn’t sick, disabled, or ill enough. Someone who controls my finances, my job, my life is telling me that I didn’t cut it – all I heard was that no one believed how sick I am or what all I’ve gone through. Papers and words meant more than my pain and tears.
It would have been honestly easier for me to hide or give up at this point. I gave myself time to move through the emotions of receiving this news – and I’m still dealing with the lasting trauma of it. However, I didn’t give up, and I filed an appeal to that decision this week. Although I’ve had plenty of people downplay or outright deny my journey through being chronically ill and disabled, I am the only person who has been through all of it. I know my story like no one else does, and I owed it to myself to fight for what I deserve.
When I first started using a cane this year, I was very self-conscious about using a mobility aid – and I crossed paths with a man in a wheelchair. We exchanged a smile that only we could understand. In that moment, I knew that we were both visible – even if it was just to each other. So I encourage all of us to keep sharing, keep talking, and keep making us all visible – and to never assume what someone has or hasn’t gone through.
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