* I would be happy if you could share this blog with many people.
Switching My Body On…
(Fibromyalgia Syndrome)
I found an article as below…
[“We deal with pain by switching on,” the president of Japan Fibromyalgia Support Association says, “as we want to look fine outside.”]
→ https://headlines.yahoo.co.jp/
I totally understand what Mr. Hashimoto means by “switching on.” I myself often say, “I switch my body on.”
You might think, “What? It sounds like ‘a matter of the state of your mind,’ doesn’t it?”… but it’s not.
Imagine:
You are feeling terrible and you have very important work to do. You are so sick as to need to stay in bed, but you somehow push yourself to work for the day.
Patients with Fibromyalgia have various symptoms in addition to the severe generalized 24/7 pain.
No, there is not a single day for us to feel fine.
Therefore, it is necessary to “switch our bodies on” when we perform a regular daily activity which is nothing difficult for healthy people. This applies to “things we want to do,” not just “things we need to do.”
In other words, this is “a life of consistently pushing ourselves.”
We may be able to move around while our switches are on, but it is a burden for our bodies. We bear the burden to be active. We are worn out like sludge when we turn our switches off.
You may say, “You don’t have to push too hard…” However, to do what we want just like healthy people do, we need a serious commitment like “I don’t care if my body is wrecked afterwards.” We use our switches because they allow us to be happy inside despite this painful life as long as we can do what we want to do.
In my case…
What I want to do is modeling and media work.
To be honest with you, just going to a place is already a burden for my body, but I am really happy when I work.
I really enjoy… talking with people, seeing their smiles, and learning different things from them.
It sounds miserable.
It sounds pitiful.
No, I don’t want you to think that way!
Just talk to me in your usual, friendly manner.
When I work, I ask my body to bear the pain to let my heart feel well because my inner happiness is more important for me.
It may be rude to bring up Lady Gaga in comparison with me… but she has made her disease public and I suppose that she has been dealing with her pain in the same way that I have.
She must have gained energy through her work as an artist after she became ill as much as before. This time, I think, her body has reached its limits and she has decided to take a good rest for now.
I suppose Lady Gaga would be happy if you accepted her as an artist and said “cool!” and “great!” instead of “we’re sorry to hear about your disease.”
My only wish is:
Please accept us as we are and say “good job!” or “great!” when we work publicly…
Please also acknowledge that other patients who don’t work publicly are also bearing the burden when their switches are on.
We don’t want you to think, “Oh? You were laughing and looking fine just a minute ago.”
When people see patients, they often say, “Oh? I’m relieved to see you are looking fine,” but that is actually when patients’ switches are on.
The reality is that they are always fighting against severe pain and other symptoms. We’d appreciate it if you kept the idea somewhere in your mind.
This may sound too much to ask, but Fibromyalgia is a disease which could happen to anyone. We don’t want you to take it as being somebody else’s problem.
I also think that we, patients, need to make an effort to have this difficult disease understood by more people. Just saying “people don’t understand!” doesn’t make any difference.
One-way effort cannot create two-way understanding.
I hope this will be a world where people care about each other.
*I hope to spread knowledge of this disease to many people. It would be nice if you could share this blog with others. Thank you in advance.
Akari Tsukamoto
