A must read for anyone with chronic illness.-A Letter To Patients

Dear Patients:

You have it very hard, much harder than most people understand. Having sat for 16 years listening to the stories, seeing the tiredness in your eyes, hearing you try to describe the indescribable, I have come to understand that I too can’t understand what your lives are like. How do you answer the question, “how do you feel?” when you’ve forgotten what “normal” feels like? How do you deal with all of the people who think you are exaggerating your pain, your emotions, your fatigue? How do you decide when to believe them or when to trust your own body? How do you cope with living a life that won’t let you forget about your frailty, your limits, your mortality?

I can’t imagine.

But I do bring something to the table that you may not know. I do have information that you can’t really understand because of your unique perspective, your battered world. There is something that you need to understand that, while it won’t undo your pain, make your fatigue go away, or lift your emotions, it will help you. It’s information without which you bring yourself more pain than you need suffer; it’s a truth that is a key to getting the help you need much easier than you have in the past. It may not seem important, but trust me, it is.

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4 Replies

  • Thank you so much for this post! It could not come at a better time for me, as tomorrow I am being hospitalized for a round of studies, and I am all trembling inside just imagining the doctors' reaction when they find nothing (once again!). I wish I did not go to the hospital, but my illness is progressing, and this is the first doctor in years who seems to be interested in my case, though she will be looking for an organic disease, fo course. I can not imagine how her kind attitude may turn when she finds nothing on the testing... I will print this out and take with me to the hospital. Thanks again! Svetlana.

  • Interesting reading thanks!

  • Thank you :)

  • I really think that FND is a load of bs. I'm not even going to pass an opinion as this so called syndrome is a cop out. I wonder how many people have died, having been turned away by some lazy neuro or doctor who can't be bothered to investigate their patient. Subsequently, that person has died, as a result of their illness, in pain, alone and abandoned by the very people who should have helped them get better. Yet so many sick people are being convinced they have this cop out syndrome. Whoever thought of the idea was clever, but not clever enough long term, because soon their stupidness will be under investigation. There are so many questions that need answering. Don't be their puppet, if you know you are ill, stick to your guns and don't let anyone persuade you your illness is imaginary.

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