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大好きなあなたへ

HMSAの、家族・友達のところにあるメッセージ。最初に読んだときに「そうそう、そうなのよ!」って思いました。
元サイト=http://www.hypermobility.org/family.php
抄訳。しかもいろいろ意訳です。
HMS/HEDS=Hypermobility Syndrome, Ehlers-Danlos Syndrome Hypermobility Type エーラス・ダンロス症候群関節過可動型(などの関節症状を伴う型)
そういうえば、小児特定疾患での病名って、「エーラース・ダンロス症候群」なのですよね。日本語の疾患名が欲しい…。

***

Dear Loved One,
大好きなあなたへ

I am sending this letter to help you understand my feelings as I deal with HMS/HEDS and the changes it brings to my life. I am scared. I don't know what the future holds for me. Will I end up disabled, in a wheelchair or will I be one of the lucky ones. If you find me being quiet and reflective, please don't think I am upset with you. I am trying to sort out my fears.
私の病気についてわかってもらいたくて、手紙を書きました。
私は不安です。だって、私にはどんな将来が待っているのかわからないのだもの。体が不自由になって、車椅子の生活になるかもしれない。だから、心配で怖い顔をしていても、機嫌が悪いって思わないでね。

I am angry. HMS/HEDS has taken so much away from me. I can no longer do many of things I enjoy doing. I sometimes have difficulty just completing simple tasks. If I appear angry please understand it is the disease I am angry with, not you.
私は怒っているの。病気のせいでいろんなことが、ほんのちょっとしたことでもできないことがあるから。でもあなたに怒ってるんじゃないのよ。

Please don't assume you know what is best for me. HMS/HEDS has affected my joints, not my mind. I am capable of making my own decisions. If I make the wrong decision, it is I who has to deal with the consequences. I still want to be part of the "gang." Please continue to invite me to participate in activities. I'll decide if I am capable of it. You may think you are being considerate by not inviting me to go ice-skating with everyone else, but it hurts when you exclude me. Maybe I can't skate with everyone else but I can bring the hot chocolate and watch.
私のことは私に決めさせてね。関節は痛くても、何ができるかは自分でわかるわ。お出かけにも誘ってほしいの。一緒にスケートできなくても、ホットココアの差し入れはできるから。

Don't tell me how Auntie Mary cured her joint problems by drinking vinegar or any other supposed remedy. I have done much research and I keep up on current treatment options. I speak with my doctor regularly, if there is a possible treatment out there, I will know about it.
あのサプリメントがいい、この民間療法がいいってしつこく言わないでね。おばさんの関節痛に効いたから、って! 私はちゃんとお医者さんと相談してやってるから。

Please don't tell me you know how I feel. You don't. Don't offer me sympathy; I don't want your pity. But do offer me support and understanding, which I appreciate. I know sometimes I look perfectly healthy, but looks can be deceiving. Please understand that I am dealing with invisible pain and a lot of fatigue. Even on a good day I feel like you do when you have the flu, tired, achy and sore. Please keep that in mind.
同情じゃなくて、私の病気への理解と手助けがほしいの。ぱっと見は健康そうに見えるかもしれないけれど、私はずっと、あなたがインフルエンザにかかって節々が痛んでいる時のように痛くて、しんどいのよ。

I want you to know that the pain from HMS/HEDS moves around. Just because I climbed the stairs yesterday doesn't mean I can do it today. Yesterday my shoulder was throbbing; today it is my knee, who knows what it will be tomorrow.
この病気の痛みは出たり引っ込んだりするものだって覚えておいてね。昨日上がれた階段が今日は上がれなくても変に思わないで。

Finally, please remember that I am the same person I was before I was diagnosed with this; HMS/HEDS doesn't change the heart and soul. I still laugh, I still cry. I still love and I still hate. I am me, I am not my disease. Please continue to love me just as you did before. I need lots of love, understanding, support and hugs, just like you.
最後に、私は病気を診断される前と同じ人間です。どうかお願い、前と同じように私のこと好きでいてね。

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