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8 Things Someone With An Invisible Illness Wants You To Know

I was diagnosed with an invisible illness in 2015 and since my diagnosis, I have learned a lot about living with this and how other people around me have dealt with it. I can’t speak for everyone with an invisible illness, but these are a few things I would like people to understand.

1.) I already know I don’t look sick.

This doesn’t mean I am not sick inside. One of the hardest parts about dealing with my illness is the fact that I am often not taken seriously because I appear to be OK on the outside. While I may look OK to you physically, this definitely isn’t always the truth.

2.) I will probably lie to you a lot about how I feel.

Not because I don’t trust you, but because lying about how I feel is often easier than trying to explain it to someone who wouldn’t understand. Another reason I tend to lie about how I feel is that I feel like a burden sometimes. While I may occasionally open up to you, I usually prefer to just try and get on with it myself.

3.) I only cancel plans because I genuinely can’t make it.

It feels horrible having to cancel but some days I am just too sick, too sore or too exhausted to make it anywhere. I always try my best but sometimes everything is just too much for me and I need to take a break. I understand this can be annoying for everyone involved, but please know that I never cancel just because I feel like it.

4.) Having to stay in bed all day is not a privilege.

Neither is occasionally not being able to eat, not being able to exercise, not being able to work and/or not being able to go to school. These things may seem tempting to you sometimes, but for me, it’s rarely done by choice. I am having to sacrifice things because I physically don’t feel I’m able to do them and it’s really tough to hear someone tell me how ‘lucky’ I am.

5.) Just because I was fine yesterday doesn’t mean I am fine today.

While living with an invisible illness, I have experienced many different types of days. They’re not all good, but they’re not all bad either. I never truly know how I’m going to feel when I wake up the next day and it often comes as a surprise. I just have to take everything a day at a time.

6.) I don’t mind if you ask me questions about my illness.

Actually, I prefer that you do. I often notice people stepping around or avoiding it so they don’t make me uncomfortable; I know they mean well but it’s frustrating for me because I am usually up for answering any questions someone may have. I enjoy trying to educate as many people as possible so that they know what other people like me experience and they can learn how to help us.

7.) I don’t want you to disappear when I’m having a tough time.

One of the biggest things anyone around me can do to help is just support me and check up on me from time to time. I don’t really want sympathy or pity, but just knowing you have someone if you need them can really help as illnesses are often isolating.

8.) I can still have fun.

I’m still the same person as I was before my diagnosis, if not stronger now that I’ve been dealing with everything that comes with having an illness for so long. I do have my bad days but I try my best not to let my illness stop me from doing what I want. Although I may cancel plans or push people away sometimes, don’t give up on me! There are still many things I can do and want to do with you. I just ask for your understanding and help when I need it.

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