The Things I Never Told You About My Chronic Illness
If you’re reading this, perhaps you know me or someone else who has chronic illness(es). Maybe you wanted some general advice or are reading this just because. I can share with you a few pointers from my personal experience.
1. I know many people are often unsure of what to do, what to say or even how to act around those with different illnesses. But what I don’t think people understand is that is perfectly OK. It’s OK not to have the right things to say all the time. We often can’t think of things to tell ourselves, so it’s understandable that you may not either. What I’ve found to be most true is that the silence a friend can offer you can speak more than a thousand words. Please hear me when I tell you that being by our side through these tough times can speak more to us than any words you could form together. If you’re unsure about something or are genuinely curious, ask us! I love addressing questions and misconceptions to help you better understand me.
2. Treat us the same way you would treat anyone else. We often seek normalcy in the midst of our unusual circumstances. Deep down inside we know we may not do things the way they’re “commonly” done, but it doesn’t necessarily mean we can’t do them at all. For example: don’t avoid inviting me to dinner just because I may not be able to eat much at the restaurant, or pass on inviting me to the mall because my muscles wouldn’t be able to keep up. I would love to get a text message asking to go out to dinner because to me, it’s about the socializing and the company, not the food. Although my muscles would never be able to keep up on their own at a mall, I have a wheelchair to use so I can still go and shop ’til I drop! (Not literally, that might be a bad idea.)
3. Please be lenient and understanding. Our illnesses turn our lives into a giant, fictional, question mark. We never know when we’re going to have a good day or a bad day. We never know when we will end up in the ER, in the hospital or get dragged into an emergency clinic appointment. We may make plans with you but are often forced to cancel them or reschedule. Please try and understand why we do this. It’s not because we don’t want to spend time with you. It’s not because we’re lazy. We would much rather follow through with our plans than battle through the next set of struggles forcing us to cancel our time with you.
4. In the end, you can forget every single thing I said and every piece of advice I have to offer, but if there is one thing you never forget, please let it be this: don’t forget we are still human. We are not our diagnoses. We are so much more. If at times our illnesses become “invisible,” remind yourself that we are not. We have feelings, hopes and dreams. Our days may be filled with appointments, medication regimens, therapies, etc… compared to holding up a job or attending school, but they are just as exhausting and physically taxing. We all struggle every day, even when it doesn’t look like it. We need you in our corner to lend a shoulder to cry on. Despite our illnesses, some days we will need your advice to help us through.
Follow this journey on Warrior in Disguise.
The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or illness during the holiday season, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.