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Help Your Family Cope with Your Chronic Illness

March 12th, 2010 · 10 Comments

It’s a significant challenge to deal with a lasting illness.  You might not feel well, some or even most of the time.  There’s uncertainty about treatments and the prognosis.  You might not be able to participate in the activities you once enjoyed.

Yet sometimes the hardest part of chronic illness is its effect on your family, loved ones and friends.  How do you help them cope?  How do you help them to help you?

"Wheelchair Ice Skating"

While chronic illness strikes young and old, women are more likely to affected by many diseases and disorders.  Irritable bowel syndrome, fibromyalgia, multiple sclerosis, and depression are just a few, where women bear the most burden.

What suggestions are there to help your family cope?

1.  Be direct with your family about what’s going on
Be willing to discuss your illness and limitations, but don’t dwell on your illness.  You are more than your illness.  Kids, in particular, benefit from an age-appropriate, honest discussion of what the illness is and what it means for them.  Invite your spouse or partner to come with you to doctors appointments, so that his/her understanding can grow.

2.  Give your family time to adjust
Families need to adjust to living with your chronic illness, just like you do.  Give them time and support.  Be patient.  Also, their learning to cope with your illness is a process, not once and they’ve got it.

Assume that your family is doing the best they can to adjust, even if they’re far from perfect.  Blaming or criticizing isn’t helpful.  Continuing to work on the issue is.

3.  Give helpful guidance
Family and friends often wonder how they can help you, so offer suggestions.  While it would be nice if everyone in our lives were perfectly supportive, that’s not the case.  So feel free to help people to help you.

Explaining what’ll be helpful to you will point people in the right direction.  They can feel useful and you can get some much-needed assistance.  You might use phrases like, “Thanks so much for your concern about my fatigue.  I know you’ve commented that I’m not able to do as much as before, and you’ve kindly offered help.  Would it be possible for you to help me wash the floor, or would it be easier for you to help with grocery shopping.”  Or, “I’d love to go to lunch with you.  However, my pain is unpredictable.  Will it be a problem if I have to cancel at the last moment, or would you prefer I call you when I’m having a good day, and we go spur-of-the-moment?”

Enlisting someone who “gets it” to lead the way with other family members and friends is another option.

4.  When to get help for your family
When family members have a hard time adjusting, have a heart-to-heart talk, (or more than one, if needed).  Encourage them to take care of themselves.  Find ways for them to help you.

Sometimes partners puts their lives on hold.  In this case, say that you prefer them to go to events anyway when you’re not able to.  Or, be thankful that they’re willing to stay home and keep you company.  You might also try to go with your family to events, even if you’re only able to go very briefly… so all of you can enjoy getting out.

Sometimes spouses or kids express anger and resentment about your illness or its effect on them.  Understand this is natural, but help them direct their dissatisfaction towards the illness, not you.  Focus on what you can do, rather than your limitations.

Sometimes support groups or professional help for families can be of great benefit.  Your doctor should be able to suggest resources.

Readers, what have you found helpful to help your family cope?

Other articles you might like:

Thanks to Jen Rossey for the photo from Flickr.


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10 responses so far ↓

  • Nickie // Mar 12, 2010 at 1:51 pm

    I think the thing that helped my family and I the most was finding things we enjoyed that I can do that don’t increase my pain, or that I enjoy so much that I don’t care that they increase my pain. As I’ve worked more at going and doing things even when I don’t feel like it, my family has actually been more understanding on the days when I don’t go because I don’t feel able to go

  • Aurora // Mar 18, 2010 at 7:21 am

    I have a wonderful husband who sets aside his own condition (he has CP) in order to help me cope with my chronic illness. He’s the one training our six-year-old son to “be with Mamma when she’s okay and not be around when she’s not okay”. But the boy has adjusted himself being around me even in my most painful of days. He offers to get my vomit cup or get me a glass of water or watch a silent film with me while I have my dark glasses on. It pains me that instead of playing outside, my son is cooped up with his sickly old mother.

  • Teri // Mar 19, 2010 at 6:53 pm

    I am so blessed that for 15 years I’ve been married to a man that, despite me having 20 migraines a month for 90% of our marriage, has never once EVER acted frustrated with me because of my pain. Now, he’s frustrated just like I am that I get them, but never at me directly, even when plans have to change last minute or the pain keeps me from household duties. He’s wonderful and I’m truly lucky.

  • Tigger // Mar 22, 2010 at 5:07 am

    Thank you for an excellent post. I am very lucky that my husband has stuck by me for over thirty years despite my problems (that started in my teens). I cannot help but feel sad, though, when he has to go alone to yet another function because I can’t, or has to do the shopping by himself, or the housework.

    I think that the person hardest on me is actually myself. But I’d still like to find a way of relieving my husband of the guilt he feels when he goes on holiday or to an event that I can’t manage, even though I keep reminding him that it is far better for at least one of us to be having fun rather than neither of us!

    I know that it is the disorders and the resultant pain and disability that he is angry at, not me, but still… I think it helps that I have encouraged him to keep up with hobbies over the years that I rarely attended (such as hillwalking, marathon running etc.) because I simply disliked them and so they aren’t reminders that I can no longer do them.

  • Maya // Mar 23, 2010 at 10:47 pm

    Hi there,

    Your blog looks wonderful ! I hope you’ll take a look at the one I just started called “Loving with Chronic Illness” : http://lovingwithchronicillness.blogspot.com/. I hope you’ll add me and we can be a resource for one another :)
    All the best,
    Maya

  • Becky Thomson // Apr 27, 2010 at 10:35 am

    What a wondeful post. That’s given me a lot to think about.

    Not living with my family means that my housemate knows a heck of a lot more about what’s going on with my than say my parents, or brother does. I’m thinking now that I’ve maybe been expecting them to know far too much automatically!

    Becky :)

  • Ann // Apr 28, 2010 at 9:28 pm

    This has always been a problem for me. It ended my marriage. However, now, my partner has parkinson’s and pain and HE gets it.

  • cna training // May 20, 2010 at 12:10 am

    Great information! I’ve been looking for something like this for a while now. Thanks!

  • Lyndon Drozdowicz // Feb 23, 2011 at 1:47 pm

    I’ve been doing a lot of abstract painting lately, extremely abstract. No brush, no paint, no canvas, I just think about it.

  • Lisa // May 5, 2011 at 8:25 pm

    Im struggling with multiple sclerosis which causes many daily debilitating symptoms that Im having an extremely difficult time coping with, mainly because its affecting my ability to go about day to day ‘life’ stuff inc exhaustion/fatigue and chronic pain. Im only 38 yet I cant do much, cant get out much, feel very alone and disconnected. Dont know what to do, am trying to give myself grace and not be so critical of myself that I cant do this or that but not feeling like I can run a household or have a social life is a HUGE loss and dont know how to cope. Suggestions encouragemt appreciated.

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