In the 20 years that I have been sick, the one thing that I have discovered from talking to many chronically ill patients is that the families are usually the biggest skeptics and the most critical of their loved ones. I have sort of earned a reputation as the “one to call” when someone who is sick needs advice or someone to talk to about their illness and this is the one common thread among every single chronically ill person that I have spoken to – their families are not supportive and not understanding.
I feel that I am very fortunate, as my parents have always been very supportive of me and have never once treated me like a hypochondriac or done the many things I’m about to discuss in this post. I have, however, experienced these things from other people in my life over the years. My husband is also supportive and as understanding as someone can be without actually having the illness himself. We can never expect people to completely understand what we are going through because unless they live it themselves, there is no way they could really know what it’s like. It’s hard for us to understand the complex nature of CFS & Fibromyalgia some days and we have it so how can we expect others to always get it? We can’t.
I have found that the common complaints I typically hear among CFS & Fibromyalgia patients regarding their families is that they:
- don’t believe they are really sick.
- think they are just lazy and don’t want to work.
- are mentally ill and are trying to get attention.
- are somehow “willing” themselves sick.
- are in a rut or depressed.
I have also talked to quite a few CFS & Fibromyalgia patients who continually push themselves and actually continue to further complicate their illnesses because they have been so wounded by their families comments and actions they emotionally shut down and won’t even bring up their illnesses around their families any longer. They continue working when it is evident their bodies physically are beyond the point of being able to work but they are so beaten down by their families’ reactions to their illnesses they feel worthless if they give up.
I recently talked to someone with a severe case of Fibromyalgia who had went through this for years with her family. She broke down when she talked to me because she doesn’t have anyone to talk to, no one in her family who will listen to her or believe her, and her kids resent her because she was sick most of their lives. I told her that she had to stop letting everyone else’s words and actions control her life. She had to take control of her life and if her family thinks she is lazy, then so be it. She knows the truth and that is what matters. I told her that by continuing to push herself she is only making things worse for herself and she is not proving anything to anyone. The only thing she is doing is continuing to destroy her health.
We have to take back control of our lives. CFS & Fibromyalgia have claimed a large part of them but they don’t have to have say over everything. As hard as it may be, we have to just say “screw it” to the people who don’t support us and try to do the best we can with our lives and we have to focus on US and what is best for US.
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I have the problem with my 22yro daughter who tells me that I just need to exercise,(I try) eat healthy (I do) and take herbal supplements (i tried). She compares me to a friend of hers mom who also has fibro. I have a severe case of CFIDS/Fibro/IBS. Not to mention 3 herniated and 3 bulging disks. I keep a clean house and take care of my 12 year old son by myself. My biggest stress is her and her constant critisism. I wish that it were as easy to be “cured” as she thinks it is. I am managing my life one day at a time. Just wish she would be more understanding / supportive..and stop equating me with others. I am not lazy, just sick. I told my doctor what my daughter had said…and he laughed and said that if that was the case he could of saved all those years in medical school, and just gotten a 4yr business degree such as her, and cured Fibro!! Thanks for listening, I have realized that the one thing I CAN control is not letting her stress me or bring me down.
One thing I’ve heard from most, relatives should be treating those family members who are suffering from chronic illness like normal… Things should never change at least for the emotional aspect, least thing an ill person would want to see is that you pity them and that they feel less needed just because they are weak at some points… Treating them normally relieves them from emotional stress which motivates them to fight more.
Very good article. Families sure need education about invisible diseases. The television commercials should be geared towards teaching them specifically. Those of us with invisible diseases know what it is like. It is our families who are ignorant.
Also, I disagree that relatives should be treating the family member who is severely disabled by fatigue and pain as they would anyone else, “normal” –We are normal indeed, but with very different needs and limitations than people without illness and/or disabilities. Equality doesn’t mean we are all the same, as much as it means we each deserve the same respect.
It is horrible to treat a sick person as if he or she is faking. It is dysfunctional and often hurtful not to be able to talk about the truth with those who say they love us, esp., when it comes to things like making it to family events or functions, or rather, not being able to make it and overworking our bodies in fear of being seen as lazy.