I try to only write positive things BUT…

This article is probably like “preaching to the converted”, but maybe it is useful for you to share to raise awareness amongst others?

Have you ever been in so much pain that you just wished you could die?

You just lie in bed, too sore to even sleep, just waiting for some meds to kick in. Often you are not taken seriously by others, not even doctors. Then after a week or so, you eventually manage to make it outside the house and drive to the supermarket, you are bombarded by people seeking donations for causes that are like elite illnesses. Where large amounts of funding goes into seeking a cure and people have been educated and recognize it as a legitimate illness. You don’t look sick, how can they tell that in fact large amounts of your meager income have been used to buy meds that are not government funded? How can they tell that you have not got a job, because you are too sick to work, but receive no sickness benefit?

I am sick of people going about cancer as if it is the worst thing that could happen to a person. There are so many people who are in pain, have diseases that you would not even know the names of, who have a disease that doctors haven’t figured out what causes it yet and therefore there is no cure. Fibromyalgia is one such illness, but there are many more chronic illnesses, many immune diseases. Some very young people have rheumatoid arthritis and the only comment they will receive is “oh but you are so young”. People are misinformed and don’t realize that this is different to Osteo arthritis that old people get when their joints wear away (or in some cases, younger people for whom the disease is hereditary).The only treatment is to treat the symptoms with large amounts of drugs. They do not have the support of the community, or in many cases, even the medical community.

For some, the only relief is through medication that is actually a chemotherapy drug. Many people with rheumatoid arthritis will lose their hair and have other terrible side effects from this medication. And yet, as opposed to its use in cancer treatment, they will have to have a tiny dose for the rest of their lives, or as long as their bodies can tolerate it. After this, there is no treatment other than painkillers…yet. So when a person with arthritis loses their hair with the weekly dose of chemo drug, their hair will probably not grow back until they stop taking the drug. So many people say “oh it is only for a short while and when it grows back it will be better than ever”. Yep – for a cancer patient this would be true, but not for an arthritis patient. This is like saying, “never mind, when you are in your eighties your hair will be beautiful, of course you will be in too much pain and won’t be able to go anywhere or do anything, but your hair will bring you joy.”

These scenarios have played out many times over the last couple of decades for me. I have been crippled by pain many times and I have begged my husband “to just shoot me”. I have also been blessed with terrific doctors and close family who have looked after me. I also have had a very attentive team of cats who have spend many hours lying beside me administering purr therapy. I have remained positive (although you wouldn’t realize this from this article, sorry), because I always knew that even though I had to endure bad days, there were also good days. My husband works two jobs and does my work as well, so we get by. I have also been able to minimize my illness and have written extensively about this online and in my books.

But there are people out there who do not have the support I have had. They are misunderstood and alone with their pain. Don’t slap them in the face bombarding them with information about other diseases, you can’t tell by looking at a person just what their problems may be.

If you liked this article and would like to read more articles that I have written I invite you to visit my website

http://www.defianceofillness.co.nz

I am a survivor from a number of illnesses, including Fibromyalgia and Rheumatoid Arthritis. I live happily in defiance of illness with my family on a kiwifruit orchard near Tauranga, New Zealand, living the life I love and doing the things I enjoy and believe are important.

I am the author of “The Crystal Diary” written about my late daughter, published in April 2012. “Living Happily in Defiance of Illness” was published in August 2012, it is healing guidebook for people affected by chronic illness. Both books are available in printed format and the Defiance book is available in EBook format for instant download 🙂

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3 comments

  1. I am a simple Mom, forty something, newly diagnosed with a variant of Marfan Syndrome and have lived with Fibromyalgia for over ten years. FMS, hands down, is my biggest challenge on a daily basis. It is so nice to know that there are peolpe who have the capabilty to UNDERSTAND how painful and life changing FMS truly is. Thanks : )

    1. I too have those that don’t understand & family members that really don’t want to! With all the meds I take they say I just want a Pity Party, well come join me because I’m having sooooo much FUN!!! I often pray to just go to sleep & not wake up! I’m tired of life & trying to put on a half way decient face. I have had this since I was about 12 yrs. & it just gets worse & now I’m 66 & just ready to go. The pain & depression have about done me in!

  2. Ok – now that I have depressed everybody, I promise to write the antidote to this very soon! Look out for the post titled “How to be fabulously sick” that is how to be sick in style 😉 It will include special tips from a bellydancer about avoiding housework so that you can concentrate on the important things in life!

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