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.

Thanks to Jen Rossey for the photo from Flickr.