I read many blogs lately in regards to people with chronic illness and things people say ignorantly, to say it bluntly. Yes, even friends say ignorant things sometimes. In many cases, we (with chronic illness) may not share the gritty details with our friends at all. Or we may share some things with a few, or we may share it all with a select few. In my case, I share EVERYTHING with one of my best friends from college who was also my roommate and took me to the ER many times. The other person I share EVERYTHING with is my mom. The rest of people I know, get the not so embarrassing details. Nonetheless, people forget that chronic illness is an ongoing thing and don’t realize what it’s like to be us.
Here are a few things I wish my friends and family remembered about living with a chronic illness
-No sense of normalcy. “Normal” goes out the window from the onset of the first symptom and it never comes back.
– My sick and your sick are different. My sick affects my ability to function and complete simple tasks. Your sick probably means you have a head cold, but you can function. You can go to work. You can get off the couch and complete simple tasks.
– sleep is healing
– If I am flaring, I may not be on a normal sleep cycle due to side effects of medications. It can take all my energy to take a shower. I am not hungry. Food will have no taste. And I am trying everything in power to eat so my body doesn’t use muscle for energy and create more fatigue.
-Fatigue is a huge factor in my life. My couch is my comfort. I may not always want to get out of the house, Most often I want to rest. That doesn’t mean I am boycotting being social. Don’t forget about me because you don’t see me.
– I deal with a lot of symptoms that you can’t see or I won’t show you.
– I love food! Although, not all foods love me.
Thanks for reading! 🙂
Reblogged this on digestingmythoughts and commented:
I couldn’t relate more to this post. I think about every one of these thoughts every day of my life. Noone truly understands unless they experience it, or live with someone experiencing it.. and sometimes not even living with that person does how we really feel justice. This is simply, perfectly put.
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I had a friend tell me once that I just needed to take better care of myself when it came to my disease. I was so angry with them. And then when I told them that it’s not that simple they told me that they know. Then why did you just say that?!
I really wish it was possible to have someone walk in your shoes for a day…
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I have had people say the same. Even strangers who don’t know me. Very frustrating.
I agree with the letting people experience what it’s like to be us. In the least maybe they will let us punch them in the stomach after eating and we can tie weights to them so they can experience out type of fatigue?!? Lol
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Both sound like plausible ideas 🙂
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Reblogged this on Inevitabliss and commented:
Love this post. Definitely something to consider when you’ve got a person with chronic illness in your life. I can relate
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I totally relate
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