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In all honesty I have deleted this post about 5 times. I am worried it’s going to come off nasty and it’s not how I intend it to be. It’s more of a educational post on how to see it from the other side of life. Too many people are guilty of snap judgement in this world, myself included, but I have found if you stop to educate yourself you open up a whole world of understanding.
Anyone who has an invisible illness deals with it. Some people are just uneducated in a particular illness, aren’t empathetic by nature and then there are people that just don’t care. Here’s a list of invisible illnesses. There are a lot. I have a few of them. The only one I have that you can see is my psoriasis from psoriatic arthritis.
It’s a hard thing to navigate. There are days where you tolerate the judgement. There are other days where you just want to break down and cry. Chronic pain, anxiety and panic, food allergies (I am severely allergic to black pepper, yes it’s a thing) – these are all too real. I have all of them. It’s really hard for people to wrap their head around it.
You’re stealing from REAL disabled people.
The worst instances I have be subjected to the severe judgement chronic illness sufferers deal with daily have been in dressing rooms and bathrooms. In bathroom I was yelled at on a day that I probably shouldn’t have been out of the house, but had to get out. I had been in a flare for about two weeks and was stir crazy. My husband took me to the movies. It’s non- stress, for the most part, on my body and entertaining. I unfortunately had to go to the bathroom and our movie theater has two handicap bathroom stalls so I felt ok using one. Sometimes I will just suck it up and deal with the pain if I think a person with a walker or wheelchair might need it. I did my business and walked out of the stall right into a lady yelling at me. She didn’t “look ill” either just older but that didn’t stop her from going up one side of me and down the other about stealing things from disabled people. Instead of getting into it with her I just pointed out the other bathroom. That didn’t satisfy her and she told me I don’t deserve to use that one either. I left that day from the movie theater and didn’t go back out unless it was to bring my kids to activities for two months. The other incident is pretty similar except that I had brought my daughter dress shopping for her first homecoming and was in so much pain from walking around a large mall that by the time we got to the last store I had to sit. The store had a changing room that had a seat in it. We used the room and were pretty quick about it, but it wasn’t fast enough for some lady (I am not sure what was wrong with her or why she needed the room) and she yelled at us. Mind you my daughter was supporting my weight when we walked out of the dressing room so my illness wasn’t so invisible then and there was a chair that she could’ve sat in to wait for us. I was a younger person than her and that’s all she cared about. It embarrassed and angered my daughter. It kills me that my stupid body puts my family in that position.
Why won’t you help yourself?
I have been told to suck it up, shake it off, eat better, exercise, get more sleep or that I am depressed….just do something to make me happy. I have been told I am young, that I will know real pain when I am older. Seriously?? If the pain gets worse when I am older my husband might have to hospitalize me, I will go nuts. I am already a 39 year old trapped in a 80 year old body. Most people that truly know me know that if any of those things would truly “cure” me I would be doing them 24/7. I have never been without fatigue, I suffered severely from it and migraines when I was younger, but damn, what I wouldn’t do to have the energy I had at 20. I am getting back a little of it because my rheumo doctor found a anti-inflammatory that works so I am dropping weight fast. That has helped. I am doing it. Not for others though. For my kids and my future.
Like I said, there are days that you just chalk it up to the person having a bad day or not understanding. But when it comes from family members or friends, it hurts more. Sometimes you forget how mysterious it is. You live it everyday. At the same time keep in mind that behind that “invisible illness” is a real person.
My fear is that this post will be seen as a massive whine or bashing of people. It’s really not. My illness has done some pretty awesome things. I am stronger, more empathetic. I have met some pretty kick ass people because of it. I started my business so I can work at home – which lets me spend time with my kids or crawl into bed on bad days. Just remember that a comment you say in passing, that you think may be harmless or because of your bad day….could really do some damage to another person’s world.