16 Things People With Chronic Illness Don't Find Helpful (Even If It Helped Your Mom's Friend's Gardener)
If you’ve lived with a chronic illness for any length of time, this may sound familiar: “Have you tried [treatment idea]? My mom’s friend’s sister’s husband did that, and it worked!”
Your loved ones likely mean well when they give you advice about your condition. But this can come off as unhelpful at best (maybe you’ve already tried that, or the treatment idea isn’t related to your diagnosis) and condescending at worst (it can give the impression that the advice-giver doesn’t think you’re doing “enough” to “help yourself”).
Loved ones may not realize what kinds of advice are actually helpful and which ones aren’t. So we asked our Mighty community with chronic illness to share the advice they don’t find helpful. We also asked them to share the advice or comments they do find helpful to give their friends and family some ideas for ways they can be truly supportive.
Here’s what our community told us:
1. “‘Just push yourself a little harder.’ That simply doesn’t work when you have fibromyalgia. Instead they should say to rest when you need to and don’t try to push yourself too hard.”
2. “The thing is: I don’t want advice. My doctors tell me what to do and what to take. I don’t care what worked for your neighbor’s sister’s friend. Everyone tolerates things differently. I know many times the advice is well-intentioned, but I still don’t want it. What I find helpful: Be supportive, try your best to understand, and keep in touch.”
3. “It’s usually the ‘Have you tried — insert supplement or dietary change — ?” And it’s almost always from someone who knows next to nothing about Crohn’s disease/autoimmunity in general. I manage my disease exclusively with diet and supplements, so I know *a little bit* about it; no, ginger tea isn’t the answer. I’m less apt to be annoyed by this advice when it comes from either someone who has studied medicine or holistic health or when it comes from a fellow IBD or autoimmunity.”
4. “Not helpful usually starts out with ‘If you would just… [go to bed earlier, exercise, eat healthier, lose weight, stop complaining, get this and that done…].’” Helpful advice focuses on self-care and is spoken with love and truth. ‘Would you like to go for a walk with me?’ ‘I can see you’re struggling, rest for a half hour and see if you feel better.’ ‘Have you tried soaking in Epsom salts?’”
5. “Unhelpful — ‘Just eat healthy.’ ‘Did you pray?’ ‘Maybe you should exercise.’ ‘Did you try (insert cure) I saw on Dr. Oz?’ ‘My mother’s best friend’s brother’s wife’s uncle had (insert illness) and took (insert absurd cure) and was cured. Have you tried it?’ Helpful — ‘It’s better to leave your house messy than to end up in the hospital.’ ‘Is there anything I can do for you?’ ‘Please just rest.’”
6. “‘You should get out more/do more/ get more exercise.’ You have no idea how much that is not going to happen! First, as an introvert, as well as someone with chronic illnesses, being home in my comfy clothes is so much better for me than trying to get out (as if I’m going out I feel the need to ‘look presentable’ and put on a smile); I’m already doing as much as I can, believe me! And, I work really hard to exercise as much as I currently am, pushing harder will only make things worse! What is better: ‘I’d love to see you more often, want to grab a coffee?’ (Instead of pushing for more activities together, let me do something low key.)”
7. “I don’t want to hear: ‘Stop eating such-and-such, you’ll be better in no time.’ Actual piece of good advice: Pacing yourself is important especially on good days, otherwise the next days will have you spoon-less. It takes some getting used to, but you get there in the end.”
8. “Advice I don’t find helpful is when someone tries telling me, ‘I cut out this and that from my diet and I’m cured!’ Like I’ve tried that and it doesn’t work. Helpful advice: sometimes getting a light massage helps relieve stress which in turn can relieve some pain. I didn’t believe it at first but decided to try it! It made me feel so much better.”
9. “‘You need to be positive and think happy thoughts.’ I am positive and I am happy. Not every second of every day, but I’m aware of what having a good attitude can do for me. But it’s not a cure and it doesn’t change what my body is going through. Saying something like: ‘Don’t forget to do something nice for yourself, especially when you’re having a rough day,’ means a lot more. And it’s a good reminder for self-care.”
10. “‘Have you tried <insert over-the-counter medication>? It was super helpful when I had the same thing happen.’ Unfortunately, that medication wouldn’t make a dent in my POTS/chronic migraine symptoms and I am on a whole regimen of prescription medications just to get me through the day. What would be great to hear is, ‘I know that finding the right medications must be frustrating and that not every day is the same. You do what’s right for you and let me know if there is anything I can do to help.’”
11. “The advice I find least useful is ‘You will feel better if you lose a little weight.’ I won’t deny I could lose some, but I’m smaller than the average woman and losing weight change how I felt. Great advice comes from my massage therapist, who teaches me techniques to reduce pain in between sessions.”
12. “I think kind words help a lot more than advice does. I already do everything I can for my migraines, I don’t need tips. What I need is someone to tell me I can live successfully with pain. That just because my life didn’t turn out how I expected it to doesn’t mean I can’t accomplish everything I’ve wanted to.”
13. “‘You just need to destress your life. Stop holding onto so much negativity. Haven’t you always been a little bit depressed, you just need antidepressants and sunshine (for chronic pain and CFS/ME). You clearly just need to lose weight (thanks, prednisone).’ Advice that does help: ‘Can I take care of (insert mundane boring thing here) for you, so you can have some guilt-free ‘me time’?’ or ‘I know it won’t fix everything, but I’m dropping a pot of (insert comfort food here) by for you, don’t get up or even answer the door, I’ll let myself in (or I’ll tee up with your partner).’”
14. “Bad — ‘You just need to snap out of it.’ Yup, that’s the cure for autoimmune disease. Good – ‘I just read this new research on your disease, would you like me to forward it to you?’”
15. “‘Have you tried smoking weed instead of taking prescription drugs that are working for you?’ vs. ‘Have you tried realizing how well you’re doing and not beating yourself up for being sick?’”
16. “Helpful things I found were for instance that time a friend crafted a paper giraffe that said, ‘There’s always a new sun on the horizon.’ It comforted me for a long time and stood beside my bed. Or when someone says: ‘I don’t know what to say, but I’m listening, and I care and I trust you to try hard enough.’”