From there, come up with a plan: Maybe you have your parents babysit your kids the night before a chemotherapy infusion so you can wind down with a relaxing bath and get some extra hours of sleep, or plan to get takeout from your favorite restaurant after your dialysis treatment so you have something to look forward to. As you push through these tough side effects, don’t forget to “acknowledge that they’re temporary and difficult,” Dr. Zarabi says. “And in the meantime, tell yourself that in the end, [your treatment] will do wonders for your body.”
3. Join a support group for people who share your condition.
As much as your friends and family may try to be supportive (or not, because people can disappoint you sometimes), they may not be able to really understand what you’re going through. But research shows that connecting with others who are in the same boat can have an amazing effect on your quality of life because, well, they just get it.
“When everyone else is busy believing that they can live forever but you’re having to deal with an illness every day, it can feel unbelievably isolating and frustrating,” Dr. Thomas says. Support groups offer safe places “where you can have honest conversations about your experiences”—without feeling like a burden.
You can find support groups via social media or through your hospital or treatment center. Otherwise, try looking for nonprofits centered on your condition; a lot of them offer resources to connect with others like yourself.
4. Say ‘yes’ if you can, but tell people what you need.
Not to be dramatic, but interacting with others is literally medicine. Studies show that social support can sharpen your memory, make you happier, help you live longer, and so much more that some researchers have even suggested that doctors should prescribe “connection.” But to do so successfully as a person with a chronic illness, you have to tell people what you need, Dr. Thomas says.
So maybe when your pals propose a day trip to a winery, you let them know you can’t drink alcohol because of your meds and ask if they’d be up for a different activity that isn’t quite so alcohol-centric. Being more open can be intimidating, especially if you’ve been primed to believe your illness is an inconvenience to others, but you might be pleasantly surprised. Dr. Thomas says most people want to support and include you, but they just might not know how. They might be afraid to ask or worried they’ll sound intrusive or insensitive.
Another way to ensure your social calendar isn’t completely bare is to create your own pain, anxiety, and/or depression scale, suggests Michael Zarabi, PsyD, a psychologist in Florham Park, New Jersey. Write down what level of anxiety equals an 8, for example—maybe this feels like dizziness and shortness of breath to you—and then determine if that’s a level where you’d benefit from hanging with others, or keeping to yourself. So the next time your neighbors invite you to a last minute barbeque at their house, reference your scale to help you make a decision. Think you’re at a solid 5? Ehhh, maybe it won’t hurt to push through it…but anything above a 7 might warrant a restful night in.
5. Get outside, even if it’s just for a minute.
It can feel so good—necessary even—to marinate in a blanket burrito all day in a dark room when your spirits are low or you’re in physical pain. But go outside if you can, says Aarti Felder MA, LCPC, a clinical counselor who specializes in chronic illness and medical trauma in Chicago.