... many of your questions and postings. I have had fibro since age 38 and am now into my 60's. I worked for many years in the field of psychology and, interestingly, did not find compassion or particular kindness in coworkers. This was difficult, but helped me to learn that I could not define myself as a person suffering from fibro. I learned to view myself as a person who was a psychologist (or teacher or accountant or nurse - you fill it in) who happened to have fibro. I learned not to define myself in terms of this disease but in terms of who the core of me is/was. I only offer this to you because all of us are so much more than our disease. Two years ago I had cancer and I absolutely refused to define myself as a"cancer survivor." I knew I was so much more than that and realized that just because cancer was a recognized disease everyone knew about and was afraid of getting, it was no different than FMS of CFS. Only the view of others about the disease was different. Please only define yourself according to who you are, separate from the FMS, because, that really IS who you are. Don't let the negativity of others change your view of yourself. I think I am a better person for having FMS and the cancer. It had made me understand and be more accepting of others and their foibles and fears. Be proud of yourselves and what you have been through. My thanks and love to you all. BRuthD
Hello BD (I will respond to your other question later my friend)
The comparison that you made cancer, I made a similar point and my comment was not posted. The reason why some people find little compassion from others is because they have what I call a 'hidden disability'. If you walked with a limp and complained of pain, people can see and relate to that. My experience in the work place was the exact opposite to yours. At that time I had Chronic myofascial pain and a degenerative disc. Like you I worked in health care. My co-workers understood that I had an 'open door' arrangement with the pain clinic and occupational health saw me regularly at their request; plus I suffered from motor dysfunction. All of the things that I mentioned could be 'seen' by my co-workers, thus they could understand. It's is very much like when you park in a disabled bay.
You display your disabled badge, You don't require a walking aid on this occasion; so you get out of the car and walk to your destination.Everybody is looking at you including other disabled people, as if to say 'Your not disabled,why have you got a disabled badge?' or 'what's you disability then because you look fine to me'. Why do they look at you this way? Because they are expecting you to require assistance or use and aid such as a walking stick or a wheelchair, because they can see and relate to this,thus understand. So whilst I agree with you that you should not let your disability define who you are as a person. In many ways it does when you don't have an obvious disability; because you frequently have to explain your disability. For e.g. (this happened yesterday) I could not use my right arm very well because of active trigger points. I asked the cashier if he could put my groceries (I had 5 items) in the shopping bag for me. He told me that 'we don't do that', so I had to explain/announce/broadcast in front of a queue of people that I was disabled and upon hearing that he packed my groceries for me!
I like the way you put this. I can relate the only people who know about my diseases are my husband my mom and dad and my sister. I have not ever spoken to anyone else about my medical issues not even close friends or family. I choose not to recognize my fibro. I am not sure if that is because I don't think they will understand or because I don't like to be viewed as week.
I worked 50-65 hours a week for the last 3 years and I think it's because I don't want my disease to be who I am.
Thank you for your post.
In the UK we have a very stringent anti-discrimination law (disability comes under this law) this law is called the Equality Act 2010 (EA). The law applies to employment, education, goods and services. This means that anything within the 4 categories aforementioned that would apply to a non-disabled person cannot be applied to a disabled person. If you are employed you have to declare your disability to occupational health. Because normal employment law, policies, procedures etc. that apply to a non-disabled person cannot be applied to a disabled person. The only law that covers a disabled person is the EA and it does in all 4 categories aforementioned (Criminal law is the only exception). Going back to the scenario of the supermarket when I asked the cashier to pack my bag and he said ‘we don’t do that’. He can only apply that statement to a non-disabled person.
The only way that he would know that I am disabled is if I tell him, because he had no other way of knowing that I am disabled. He packed my bag after I told him that I was disabled because the EA says that he has to, because a shop is classed as a service. In fact if I needed it to be carried to my car. That shop would have to do it. So let’s say that I asked him to pack my bag and he declined .I packed it myself and fell as a result. Now I cannot work. I apply for welfare. They reject my application on the grounds that the state did not cause my injuries, the supermarket did. You have to sue the supermarket. The only legislation that you can use to sue anybody is the EA because you cannot wave your right to come under it. The party who you are suing under the EA only have 1 of 4 defences available to them. One of those defences is ‘I did not know that she was disabled and I had no way of Knowing that that she was disabled so I treated her like a non-disabled person, hence I did not assist her when she asked’. I would have lost the case. In the UK you have to say that you have a disability if it is not obvious. Because otherwise you will be treated as a non-disabled person and that can be to your detriment.
Dearest bruthd: I wanted to thank you for your post. I am also in early 60's, and have had FM for about 15 yrs. Also had Cancer about 13 years ago. I think I finally figured out, that we have different severity levels of pain with FM. Never realized this before, and thought we all had the same pain level. 10 years ago I went down in history books at the worlds best neuro. cntr. for having all my cervical discs dissected except 1&2,(now herniated from a rear-end collision). I must say, that I've been so lucky to still be up and about, as well as I'm able each day. I've never called myself "a cancer survivor", but I don't really know why.Through it all, the hardest I've had to endure has been trying to live with the pain of family members not believing that you're in, and dealing with chronic pain every day.
I'm not married and very independent, so it's very hard accomplishing responsibilities, and trying to justify FM pain to someone who's supposed to love you. That makes me more sad than all I've been through.
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