Getting diagnosed with a chronic illness you’ll need to treat for the rest of your life means all kind of adjustments. There’s the physical ones — taking medications and navigating their side effects, managing the out-of-nowhere fatigue, accepting you may not be able to work or exercise like you used to.
But many patients confess that it’s the emotional stuff — the guilt over missing out on things, the frustration of other people not understanding just how crappy you feel, the anxiety over when you’ll start feeling better again — that’s the hardest to get used to.
An important thing to keep in mind, according to rheumatologist Nancy Shadick, MD, an associate professor at Harvard Medical School, is how much control you have over your disease, even when it seems like you don’t.
“There’s a lot that [patients] can do, both in the treatment of your illness and for the other symptoms,” she says. “You will be able to return to good functioning capacity, be free of pain, and you have a lot of capacity — or what we say is self-efficacy — to have control over your illness.”
Indeed, the patients who have an easier time coping with their illness are those who have high self-efficacy, says Dr. Shadick.
So just how do you build up this self-efficacy?
This topic came up in a recent #CreakyChats Twitter chat, when our community was discussing how to stop being so hard on yourself. Here’s some of everyone’s best advice.
1. Know when you’ve been in a funk for too long
A hard thing to do at times. I’ve had #RA 32 years. I’ve learned and I still am learning to know anger & depression is okay, but if hangs around too long I must seek help. A positive mind is so critical in moving forward! — @TerezHumphrey
2. Get professional support
Get a therapist or attend a support group, you won’t regret it. I believe that depression is so intertwined with #chronicillness that you cannot let this go unsupported. — @bodymindconsult
3. Give yourself things to look forward to
I felt guilty for years, but I try my best. Surround yourself w those who lift you up, not bring you down. If I miss an event, I can get depressed. I’m learning to accept my limitations but not expect failure. It’s important to have events to look forward to. — @Dividivigirl
4. If you need to be ‘sidelined,’ find a way to make it positive
After years of being sidelined, I’ve realized that this is a part of my life now. If [going to an event] happens, I’m happy and I’m prepared for the payback that comes two days later. If it doesn’t, I make sure I do something positive at home, like art or snuggling with my cats. — @globetrotteri
5. Give yourself a set window to wallow
I set a timer on my phone for 15 min and during that time I’m allowed to express whatever emotion(s) I feel at that moment. When the timer goes off I say a prayer & hand them over to God. Then, I start planning for the next thing! NOT EASY, but it’s def helped me. — @ashleewitt
6. Only use social platforms that make you feel more positive
I think for me I use or try to use these platforms in a way that’s positive and supportive and that has made a nice little shady spot for me. I protect and it I don’t buy into the distractions. — @RaBionic
7. Try to do one thing each day you’re proud of, however small
I try to accomplish one thing each day. This ranges with my day to day ability (e.g., doing an entire nine-to-five day of work to doing one simple house chore, like wiping down a bathroom counter). Therefore, I don’t have to call it a ‘bad’ day. — @kmc5k
8. Remind yourself about the ‘invisible’ factor
I even appreciate that the invisible aspect of this illness doesn’t allow most people to understand what I am going through. I get no empathy from coworkers. I don’t hold this against them, though, because they have zero perspective; that is not their fault. — @AnnieGriff7
9. Remember that you are more than your illness
Always remember that you are NOT your chronic illness or mental illness. It’s okay to say no when you’re in a flare or in increased pain. The characteristics of your illness never define who you are! There’s only one YOU so remember to be kind and love yourself. — @migrainediva
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