We recently asked members of the Buzzfeed Community who deal with chronic illness to share the things they'd want their loved ones to know. Here's what they had to say:
1. Every day is unpredictable.
2. One of the worst things you can tell us is 'at least it's not cancer.'
"Telling someone with a non-terminal chronic illness 'at least it's not cancer' does not help. No, my disease won't kill me and while I'm grateful for that, I still have to live with this disease for the rest of my life."
3. We're not just seeking attention when we talk about our illness. We honestly just want a level of understanding and awareness.
"I'd rather connect with others by talking about my illness."
4. We're actually pretty hard on ourselves.
"I judge myself too. Every time you doubt whether I'm telling the truth about a symptom, a flare-up, or a reason I had to miss something, I am too."
5. We still like to spend time with you, even if we ARE in pain.
6. And just because we have early bedtimes doesn't mean we're boring.
"I don't go to bed at 9 p.m. because I'm boring. I do it because staying upright all d*mned day is exhausting. #EDS #ZebraLife"
7. In fact, we want to have fun too, and we are still capable of it.
"Just because I can’t go out partying doesn’t mean I’m not fun, there are other ways to enjoy and entertain yourself and others. Whatever happened to game nights?"
8. Living with chronic illness can be so, so lonely.
9. So don't count us out of things just because we're "sick."
"I still want to be invited to things! I understand that people are trying to be considerate but maybe I’ll feel good on a day when friends or family want to go to the mall!"
10. Being young doesn't make us invincible.
11. Sometimes we aren't given proper diagnoses, or we're misdiagnosed because chronic illnesses are still largely misunderstood by the medical community.
"Even if we don't have a name for what's going on with us, please just know...it's real. Diagnosis takes what feels like a lifetime."
12. So even if we're not acting like it, we're still sick!
"I can 'get it together' for a family dinner or a trip to the store, but that doesn’t mean my situation’s changed. I’m still sick." – martejuliem
13. There isn't an easy cure, so please don't suggest things that you think "will work."
Me trying to keep my symptoms in check... #mcas #spoonies #chronicillness
"Saying that I can cure myself with something like yoga or a fad diet is hurtful, ignorant, and puts the blame for my pain squarely on my shoulders, as if I haven't already done everything in my power to improve my health."
14. In fact, the medications we have to take can be worse than the actual illness itself.
"The side effects of my meds include nausea, fatigue, headache, loss of appetite, and probably worst of all, irritability/mood swings. Even though the medicine helps the condition it’s intended to treat, it’s almost like it creates a whole other sickness."
15. And surgery isn't a miracle cure, even though sometimes we wish it was.
"I wish people knew that having surgery didn’t automatically fix us. Sometimes surgeries don't work, or they do, but you still have pain."
16. It's actually really annoying when one of our treatments is your current fad.
17. So don't be afraid to talk to us about our illness.
"I understand that people don’t want to be rude by bringing it up, but sometimes the burden of being in pain and not being able to talk about it can make me feel like I’m carrying some deep dark secret and feels incredibly lonely."
18. Because honestly, sometimes all we want you to do is listen.
"Please just take a moment to listen to us tell you about our illness. Don’t try to Google it or think you know about it when you’ve just heard of it."
19. When we say we BARELY made it out of bed today, we're being serious.
20. Because even if our bodies are cooperating, our minds might not be.
"Mental illness has stripped away very important things in my life, and I don't think a lot of people understand that it's literally something deeply wrong with my brain. If I could snap my fingers and be 'normal,' I would have already."
21. So it's important to understand that while all chronic illnesses are not the same...
"Just because you have a chronic illness or know someone who does doesn’t mean you can understand mine."
22. They all have one thing in common: a chronic illness is for LIFE.
23. But despite all the struggles, we have days that we're grateful for what we go through.
"I’ve had type 1 diabetes for 10 years and I wouldn’t be who I am without it. I’ve met and connected with so many people through my disease. It's truly helped me grow as a person."