2 times a month, readers’ questions will be addressed.  Submit your’s here.  (Please remember this isn’t medical advice;  these are general answers for all readers.)

 A reader Susan writes:

Greetings, I’ve had CRPS for several years, and I’d like some suggestions on how to communicate to my family and others.

I tell them that I’m ok and have accepted CRPS as part of my life, and to please stop feeling sorry for me.  I’d prefer they ask me what they can do to help me, for example, “Could I wash your kitchen floor for you?”  Or, I’d like to hear, “Let’s go out for lunch sometime, but I’ll wait for your call because I know you have good days and bad days.  I don’t want you to worry about needing to cancel our lunch.”

How do I tell my husband to stop using my illness as an excuse for missing engagements?  I’d prefer that he go to events by himself and not feel guilty for leaving me alone.

I’m content knowing that my illness is real, and I have a great team of doctors that have helped me so much.  However, I still get comments like, “The doctors can’t be doing their jobs because you’re still in pain.”  Yikes!  I don’t want people to feel sorry for me.  I want them to treat me like they used to, before CRPS adopted me into its family of many.

Susan’s questions and observations are great.  Chronic pain affects not just the person with pain, but his or her family and friends also.  It’s an adjustment that families have to make too, figuring out how to live with pain in the family.  It sounds like Susan’s family might still be coming to terms with her pain disorder.

I also assume that families are doing the best they can to adjust, but guidance is sometimes very needed.  Friends often wonder how they can help, and offering suggestions is sometimes useful.  While it would be nicer if everyone in our lives were perfectly supportive, that’s not the case.  So feel free to help people 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.  Phrases like, “Thanks so much for your concern about my pain.  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.  Would you mind if I have to cancel at the last moment, or would you prefer I called you when I was having a better day, and we went spur-of-the-moment?”  Or you might enlist someone who “gets it” to lead the way with other family members and friends, and help them be helpful.

When family members have a hard time adjusting, have a heart-to-heart talk - or more than 1 if needed… be patient.  Learning to deal with a family member in pain is a process, not once and you’ve got it.  Pain changes the lives of everyone involved.  When family members put their lives on hold, tell them that you prefer they go to events anyway when you’re not able to.  But if they still don’t, let it go for a while.  Perhaps they feel better at home with you… be thankful.  Perhaps they really don’t want to go to anyway… let them stay home and keep you company.  Or, can you try to go with them to things, even if you’re only able to go very briefly… so you both can enjoy getting out.

And readers, how would you recommend dealing with comments about doctors not doing a good job because a person still has pain?  How have you dealt with those types of remarks?  I also invite you to add your suggestions and thoughts about Susan’s other questions to the comments below.

Lastly, a while back we had a series about Family Issues and Pain, which might be helpful to review.  Other articles you might like to read:

• Are You Pain-Free?  10 Things Those Of Us In Pain Would Like You To Know 
• A Husband’s Thoughts About His Wife’s Pain
• 7 Tips For Family Members To Take Care Of Themselves, Too
• What To Do When Pain Causes Family Problems
• 9 Tips For Talking To A Person With Pain
• 3 Resources For Families To Learn More About Pain

Good luck, Susan.

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