They Think They Know
Posted on 2005-12-21
"I've known people with cancer but none of them died, so if you die, then you couldn't have really had cancer."
None of you can imagine saying that to a cancer patient, can you??? I certainly hope not. However, nothing seems to stop people from saying what I've heard a million times:
"I know other people who get tired but none of them have M.E/CFS"
or
"I know other people with M.E/CFS and theirs doesn't appear to be as bad as yours. They didn't have to change their diet, use a walking stick from time-to-time, take all those medications or go to the doctor/hospital/therapy as often as you do, so you can't really have M.E/CFS, you must be making it up/it's all in your head."
I've heard variations of the above from all kinds of people; some meant it out of curiosity, others as a negative comment or criticism. People assume that because they know a little about something, they know it all. It's like telling me you know the answer to an advance math problem, when all you've studied is basic algebra.
Allow me to explain to you my illness:
I have Myalgic Encephalomyelitis [which is also known as Chronic Fatigue Syndrome], and I have had it for nearly 6 years, possibly longer. I finally received a diagnosis 4 years ago. It wasn't the answer I expected, nor the one I wanted. These past 6 years have been the most physically hellish time of my life, and as yet I have no idea when it will end. Nobody does.
Not only do I have M.E/CFS, I have several other health conditions to throw into the mix as well, GORD and IBS being just two of them.
I sometimes need to use a walking stick when I'm able to get out and about. I was bedridden for a number of months, and went a whole year without being able to shower by myself. I lost my job, my independence and many friends through being unwell.
I have suffered medication complications, intense pain and fatigue, and watched those who love me despair. I have vomited blood, experienced muscle spasms and tremors, collapsed, and run mysterious fevers. I have had enlarged organs, chronic infections, and became addicted to tablets which were supposed to help me.
I have been poked, prodded, X-rayed, scanned and tested for almost everything under the sun. I�ve swallowed approximately 360 tablets in the last month alone. I have taken steroids, opiates, analgesics, anti-inflammatories, proton pump inhibitors, beta-blockers, anti-depressants, and numerous other medications; some of which help ease my symptoms, none of which make me well.
I have tried every alternative therapy I could afford on the meagre sickness benefits I have been awarded, but only after I thoroughly researched them in case they made me even more unwell.
I keep up to date on the latest research, subscribe to several newsletters, and constantly seek out doctors who might know something the last one didn't. I read, write, and breathe with the intention of helping myself and others beat this illness.
I'm not happy about any of this. I'm not proud of it either. I want to be healthy, happy and 'normal'. At the moment I'm not, and at this rate will likely never be.
But I haven't given up. I want to find an answer, I want to help others, and above all I want the pain to stop. Nothing will stop me from reaching these goals, including this illness.
I believe that my life is worth something, whether I have my health or not. I believe that I can still accomplish great things, even if it takes me much longer to do so and they aren't exactly what I had once dreamed.
Just because I sometimes need to use a walking stick, have a blue disabled badge and take pills every day, does not mean I am broken, only that my body is. If you ask me how I feel, mostly I wont tell you the truth, but not because I have anything to hide or be ashamed of. I just don't want people to feel sorry for me. I struggle enough with my own acceptance of this illness, I do not want to waste my time making you accept it. It is. This is what I have. That is the reality of the situation.
Yes, it sucks. No, it's not fair. No, I don't deserve it. Who does???
No, I'm not interested in your latest 'cure'. Yes, I've already read, researched and learned as much as I can. What do you think I do all day???
I have an illness that I may well have for the rest of my life. There is no rest, no moments free from it. There is no cure, no answers. There is no way to win or beat this. I can only live with it, adjust to it, and make changes to make it easier to live with.
I do not have to prove to you I am sick. I do not have to prove to you I am in pain. I do not have to prove to you I am tired, foggy and exhausted.
People just have to accept it, like I do.