What's Wrong with Me?

[greygoose]

NO! Don't anybody answer that! It's just the title of a very nice article about autoimmune disease. It made me feel warm and reassured...

newyorker.com/magazine/2013...

[Hidden]

Now that's a loaded question gg...!!..Lol

Passionate article and so close to home.

Thank you for posting

Flower

[greygoose in reply to Hidden]

You're welcome.

[Jazzw]

I was hoping it would have a magical ending. I should've known better...

This bit sounds kind of typical, doesn't it?

I made my way to my doctor’s busy office, and sat with people who looked very, very sick. When I raised concerns about how I was doing, my doctor told me, “This may just be how it’s going to be. You may always feel like you’re eighty per cent.” She intended, I think, to help me adjust to a new reality, but the effect was the opposite. The prospect was unbearable. I began to deflate like a punctured pool float.

A few days later, she called. “Your labs look normal, except for the thyroid hormones,” she said. “Perhaps you should try lowering your dose. You might be hyperthyroid now.”

I told her it felt as if I needed to raise the dose.

“O.K., then, raise the dose, and see how you do,” she said agreeably. I was both grateful and a little unnerved. I hungered for certainties even though I realized that autoimmunity was a morass of uncertainties.

Sigh.

[greygoose in reply to Jazzw]

Yes, well, I wasn't expecting miracles when I read it. I just liked the way she wrote it. We all know the way it goes. But she's managed a balance between acceptance and determination, which I admire.

[Jazzw in reply to greygoose]

Yes, I really enjoyed the writing. Think she managed to capture so many of the thoughts we have, the things we try, the way we clutch at straws, go gluten free, dairy free, nightshade free... I've tried to make this the only place I talk about it, though - others just don't want to or can't get it.

[Marz in reply to greygoose]

..GG - yes acceptance is huge ! We talk acceptance in yoga when we are not able to quite manage a more difficult position/asana - it is a journey....

[Clutter]

GG, It's quite a journey, illness, despair, confusion, obsession and finally acceptance. I breathed a sigh of relief when she got there. Thank goodness we can find help on the internet, it must have been so isolating previously.

It's about time the medical profession acknowledged the autoimmune impact whether thyroid levels are normal or not.

[greygoose in reply to Clutter]

Not going to happen any time soon! Not while Big Pharma has us all in its greedy clutches.

[Rosy_Holly]

Thank you for posting.

[greygoose in reply to Rosy_Holly]

You're welcome.

[Hidden]

Realy enjoyed 😁

[greygoose in reply to Hidden]

Good.

[gabkad]

Good find, Goosey!

[greygoose in reply to gabkad]

[recovered7]

Thank you so much for this post. I so related to her suffering, and because i am feeling so bad right now it actually made me feel better. Her Journey read like many of us here on this site.

As usual, great stuff xx

[greygoose in reply to recovered7]

You're welcome, recovered7. If it can make someone feel better, then it truly is a great article!

[faith63]

This is a hugely important article, that i will finish tomorrow..it's huge!! I am very interested in the Johns Hopkins research on this and possibly being a guinea pig..i need help! Thanks so much!

[greygoose in reply to faith63]

You're welcome, faith. It would be great if Johns Hopkins could help you. x

[Nickinoo1]

Wow there's so much to relate to. The balance of searching for answers and trying not to let that consume you is so true. I have felt obsessed with this illness at times that I forgot to live as best I could.

Thanks Greygoose. I'm sharing this with a few people who might need some understanding.

[greygoose in reply to Nickinoo1]

You're welcome, Nickinoo. I hope it helps them understand.

[Lynneypin]

Yes, so much to relate to! Especially how much TIME I spend on my illness(es).

I particularly related to this -

"I don’t know if I can take this anymore,” I told her. “I just want to get better. I want to go for a day without thinking about my body.”

As someone with multiple autoimmune issues, this was a fantastic read. Makes me feel less alone....thanks so much for sharing.

[greygoose in reply to Lynneypin]

You're welcome, Lynneypin. I'm glad it helped.

[Marz in reply to greygoose]

Great article GG - just wish I had read it 40 years ago .....so well written. We must look out for her book

[greygoose in reply to Marz]

Oh, gosh, 40 years ago - the Age of Innocence - when I didn't know what a thyroid was. Between 30 and 40 was the best period of my life - on a hyper roll, I now know! I was slim and had lots of hair and lots of energy; lots of activities and three Young kids to romp around with. It was a great time. We travelled the world. Well, a little bit of it, anyway. More than I can do now!

But enough of that. Acceptance of my present lot. Zen. Things could always be worse!

[SilverAvocado in reply to greygoose]

Haha, lots of hair and lots of energy. Who could wish for more

[greygoose in reply to SilverAvocado]

Exactly! Unfortunately, when one doesn't know what's ahead, one doesn't appreciate these things as much as one should!

[Suin]

I read this a month ago, and thought, this is Me!! That's when I began searching and found healthunlocked!!

I also was hoping for a happy ending.

I'm not giving up😉💞

[greygoose in reply to Suin]

Well, look at it this way, there's no happy ending because there's no ending of any kind. Yet. She's still living her story. It could still turn out brillianly well.

[Hidden]

I was deeply moved, almost to tears, by this article. Many many thanks for sharing, I shall read it often.

[greygoose in reply to Hidden]

You're welcome, timthomas. I'm glad you like it.

[mourneadventurer]

Excellent well-written article thanks for sharing Greygoose.

[greygoose in reply to mourneadventurer]

You're welcome.

[abby_mcc]

Obviously a good article going by comments.. but ARGH.. brain fogged and haven't managed to read it all yet.. Will have to print to read

[phoenix89]

Good article. Long though! Thanks for sharing, greygoose. A few bits that chimed with me were:

"The worst part of my fatigue, the one I couldn’t explain to anyone—I knew I’d seem crazy—was the loss of an intact sense of self."

"Normally, absorption in a task—an immersive flow—can lead you to forget that you feel sick, but my fatigue made such a state impossible."

"Healthy people, as you’re painfully aware, have the luxury of forgetting that our existence depends on a cascade of precise cellular interactions."

[greygoose in reply to phoenix89]

Yes, I know exactly what she means. And all that is so difficult to explain to other people. She puts it so well.

[SilverAvocado in reply to greygoose]

This article was reposted today, and I came looking for other threads on it

I really liked the end, and was very relieved when she learned to accept and be happy with 80% Hovering around 20% myself, with 60-70% being the dream (working part time, walking enough to take care of myself and do essential chores, a bit of leisure, etc), I do get frustrated with people who have so much ability not appreciating it

It's interesting to see a lot of people didn't like the end. I also liked all the quotes Pheonix89 mentions. Really good description of what fatigue feels like!