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Fibro Help - A Painful Four Letter Word

Posted Apr 02 2011 9:56pm

Hayzell at Possibilism.org is hosting PFAM this week. Topic: “ Is help a four-letter word?

The common myth about asking for help is that people in pain won't ask for help because they do not want to be a burden.  

In reality, most chronic pain people must absolutely depend on the help of others whether they like it or not, and the problem is finding people who are willing to provide specific and ongoing assistance. Some love and compassion would a plus, but active assistance hits the spot.

The emphasis and responsibility seems to be placed on those who require the help to simply verbalize their needs. The only thing stopping people from rushing to their aid is the fact that they haven't been asked.  

I am fortunate in having Fibro Mom, my primary caregiver, who manages my needs without being asked. I feel, however, that she has been carrying the burden of caring for me all by herself for nearly five years.  

When Fibro Mom first began to show some signs of wear and tear and I mentioned my concerns to my psychiatrist. She suggested that a good place to start would be have a family meeting with my father and brother to clearly outline my health condition and present a specific plan.  

For instance, instead of saying, "I'm in so much pain. Please help me." -- I should instead request help for specific, clearcut tasks. For example:

  • Commit to driving me to bi-monthly appointments so Fibro Mom could continue her part-time work, without continually taking time off. 
  • Help Fibro Mom with weekly grocery shopping and pharmacy runs, when I could not make these purchases online.

My father is retired and I thought that he might be able to commit to driving one day a week to take me to my physical therapy session that takes about two and a half hours, including the driving. This would give Fibro Mom time to do other things and make it to work on time. My brother has his own apartment and a demanding job, but I thought he could help Fibro Mom on the weekends.

Imagine my surprise and dismay when my two straightforward, organized requests for help were met with no response. For some reason, there was a reluctance to commit. Of course, they would help...they just didn't want to fall into such a rigid plan and expressed the feeling that they were being manipulated somehow.  

How could my psychiatrist be so wrong?!

When I talked to my friends about it later, they rationalized that the absence of help from my family members' was caused by their inability to come to terms with my disability.

Perhaps, they speculated, it was easier for my father to believe it was all in my mind and therefore easily remedied once I faced the facts.  Perhaps they just couldn't deal with the possibility that I would be permanently disabled with chronic pain and fibromyalgia.

What I hadn't anticipated, thanks to the persuasive argument by my psychiatrist supported by online "how to get help" articles, is that asking for help is often fraught with complications and difficult emotions.  

I felt dissapointment and some resentment that I could not depend on more support.  But I also considered that perhaps my family just found and still finds it too complicated to become involved in my current situation. Perhaps they also resent the fact that Fibro Mom is dedicating so much time and energy to me.

I take two things into consideration now when I ask:
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