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Please Don't Invalidate My Behcet's Disease When I Post Nice Vacation Photos

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I wasn’t sure whether to share my holiday photos because I was worried I would be judged. Judged for being on holiday, judged for making an effort, judged for not constantly looking “poorly,” whatever that may look like? But I then realized people are not judging to be malicious or nasty. They just don’t understand.

This is partly my fault because I don’t share pictures of myself when I’m at my worst. (Why would I?) I don’t advertise when I’m in the hospital or when I’m struggling. I want people to see me in my best light, not my worst, so I get why some people may struggle with understanding how sick I am especially when they don’t see me from day to day and they don’t struggle with a debilitating illness themselves.

But then I thought, I shouldn’t be penalized for trying to live a normal life. Yes, you might see a nice picture of me on holiday. But what you don’t see is the planning it took to get me there in the first place, the help it took to get me on the plane, the extra suitcase I had to take just for medicines, my liquid feed and medical equipment, etc. The anxiety of traveling out of my comfort zone, the fact that I’m wheeled around in my wheelchair for the majority of the time and when I want a nice picture, I have to be positioned strategically with something to hold on to with my wheelchair on standby as soon as I’m done. Me sitting and watching everyone eat their all-inclusive food and drinking endless alcoholic beverages while I’m sat being tube-fed. The list goes on, but you get the picture.

woman in bathing suit posing by a pool

I wish I didn’t worry about people’s comments, but I guess what it comes down to is the fact that there’s still not enough awareness about invisible illness and the struggles attached to dealing with chronic and debilitating diseases. So although I know I’ll get comments like, “ Well, she looks fine,” “She can’t be that bad because she’s on holiday,” I’m just going to brush them off and hope one day those people might have a bit more understanding.

I just feel like I constantly have to justify myself — I almost feel like I need to post a picture of my stoma sight where I’m tube-fed, or an x-ray or test results just to prove the pain I’m in even though I post positive pictures. The ultimate thing is, I know the people who really know me won’t think like that — they’ll just think it’s amazing that I’ve managed to do something positive. I’m a 28-year-old woman, and I shouldn’t be judged or ridiculed for going on holiday with my family or wanting to look feminine and pretty with a nice backdrop rather than the normal PJs-in-bed look. This isn’t a rant, more of a concern that invisible illnesses are still so poorly understood. It makes me sad, but I guess the more awareness we get out there, the easier it will be for people to understand.

Photo via contributor.

Originally published: June 26, 2019
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