9 Ways You Can Support a Loved One With Chronic Illness
When I was diagnosed with ulcerative colitis, I imagined it would be a lot like having the flu – it’s awful for a bit, but things get better and return to normal. Living with ulcerative colitis is not, in fact, like that at all. My disease has infiltrated every part of my life, and I am so familiar with it, it’s sometimes hard to remember that not everyone has the same intimate knowledge I do. Conversely, when it comes to talking about my health, it’s often challenging to share – there are all sorts of excuses that keep me from saying what I need or how I feel. And in the end, not sharing keeps the people who love me from doing so.
But no more! For anyone dealing with chronic pain, illness or other issues: You deserve love! You deserve to have your needs met! Share this article with the people you care about – it’s a way to talk about the things that matter without having to rack your brain yourself.
Here’s what you can do to support my chronic illness:
1. Talk with me about my symptoms and flares so you know what to expect. It’s so much easier to for me to communicate when I’m not feeling ill, panicky or down. Let’s make time to discuss the ways I need love and support when things are tough before my symptoms flare up.
2. Ask better questions. “How are you doing?” is hard to answer when I’m not feeling well. My brain has to work to sort through all the “I feel like crap” feeling to answer your question, and when things are bad, that’s a lot of work. Asking “how was your Tuesday?” or “how is your body?” or “what was nice about your week?” alleviates some of the mental work on my end, and helps avoid the generic “fine.” And if confiding is something I have capacity for, good questions give me space for that, too.
3. Know what’s in my “emergency kit.” For me, I need ginger tea, bone broth, a hot water bottle, comfy clothes, a hot bath and at least 10 hours of sleep. It helps me when my partner heats up soup or makes a hot water bottle. I feel better and loved.
4. Make a list of go-tos for times of trouble. It’s too easy for me to get stuck feeling down when things are hard. Having a list of low-key activities that are distracting and uplifting can (literally) save the day. My favorites include meandering through Trader Joe’s, going for a walk around the block, visiting the library and watching a movie or TV.
5. Have a list of easy-to-do activities that don’t alienate or exacerbate conditions. Ask how I’m feeling and what I’ll be up for. Have a few good standbys – fun things that distract from present misery and act as pick-me-ups are gold. Some things I’d enjoy doing when I don’t feel well:
- Go to botanical gardens (pretty things to look at, light exercise and the ability to sit when necessary)
- The library (quiet spaces, ability to sit and read)
- A symphony/ballet/orchestra/play (interesting things to take your mind off whatever’s going on, and again, the ability to sit)
- Make a restricted-diet-friendly dinner at home and make it fancy. Let’s drink bone broth and ginger tea in the candlelight.
- Know “safe” go-to restaurants for when cooking is too much work.
6. Trust me. Sometimes symptoms change quickly – for better or worse. Yesterday I biked my usual five or so miles around town, today I can’t get out of bed. This doesn’t mean the pain is any less real. I’ve done my research, am doing my best, and it’s a lot of work. Try not to diagnose me or offer unsolicited opinions. (“You’re probably gluten intolerant” is not helpful.)
7. Do your research. This doesn’t have to be a full-blown dissertation, but even the most basic understanding of my condition helps us communicate better. Especially if I have a chronic and/or an invisible condition, adjusting your expectations of me makes me feel supported, seen and cared for. When you understand that there will be some days when I’ll be tired for “no reason,” and that’s just part of having a chronic condition, I feel safe and reassured that you’re there for me, rather than judging me for being tired.
8. Be in my corner. Just existing means fighting a tough battle. But we all need allies and you can use your privilege to make my life a little better. Advocate for me: stand up to other people who say or do silly things, and remember that I have different needs when you’re planning a trip, going to a restaurant, etc. Send me the menu ahead of time, consider my energy levels when planning a trip or activity, and always ask what I need and what I’ll be up for.
9. Remember: sharing is sacred. Disability and chronic illness are really freaking hard. They cut to the core of who I am, and define me in ways I never imagined. So when I share, when I say I’m tired, or in pain, or doing well, remember: when I share, that is love. It means I trust you. And that trust is gold.
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Thinkstock photo via YakobchukOlena.