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An Open Letter to My Family

© Cynthia Webber (Jausten)

Coping with fibromyalgia on a daily basis can be made more difficult for those of us with the condition when our families are unsupportive. The following open letter is a part of an entry from my daily journal, and part of a letter which I wrote to my own family recently. It may be very strong and blunt, but sometimes we have to take risks with our families and friends in order to care for ourselves. I took a risk, and now have to continue to be assertive in what my needs are and continue to care for myself first.

The Letter

Once again my life, my needs, and who I am has been validated by an outsider of our family life. Sometimes it takes a professional counsellor to help people to communicate and to understand the words which are spoken by people. My boundaries around myself are becoming stronger as you try to break them and force me to become the person who you want me to be. As was pointed out by this counsellor, the more I am pushed, the more I will retreat away from you. Your fears and anger can no longer control me as I choose to follow the path of my life.

It becomes clearer to me each time we visit this counsellor that I am a person who is worthy of being treated with the respect and understanding that I deserve. I am allowed to spend time in solitude, writing, working on the computer, and chatting with friends online, on the phone, or in our home without being interrupted by you. Hearing this from a counsellor reinforces my sense of identity and helps to keep the boundaries firmly around me.

I did not ask to have fibromyalgia, and I did not cause it, nor did the computer, or anything else that I currently do now. If anything caused it, it was the many back injuries that I sustained while working as a nurse.

I have a hidden disability, I am on permanent disability, I have a handicap parking permit, I live in constant pain, and yet you still can not understand that I can no longer do certain activities.

I have struggled for the past two years to come to the acceptance of my condition, yet you, my family, still live in great denial. I can no longer help you to understand, because I must take care of my own needs first. Thus, I have chosen to stop doing the multitude of things which are still expect of me. I am going to care for myself, and spend my time doing what I choose to do rather than feel guilty because your needs aren't being met. You may be angry, but no doubt, you are already angry.