After the Plot Twist

Chronic illness changed my story. Now what?

Advocacy

Am I Still One of the Millions Missing?

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May is ME/CFS Awareness Month.

A year ago I suspected that I had POTS and was waiting to be tested and seen by an autonomic disorders specialist, but I thought it was a likely diagnosis in addition to the probable ME/CFS I thought I had. No one seemed comfortable officially diagnosing me with ME/CFS, but I had doctors bring it up and agree that it seemed likely it was what I had, and my experiences in the patient community made me feel like I had found people who “got it.”

Last year I was involved with a local group of activists planning and organizing a Millions Missing visibility action in my city to raise awareness for ME/CFS and call for more research funding. I volunteered to print posters and brought multiple pairs of tagged shoes to represent people who were unable to make it to an event near them either because there wasn’t one close by or because they were bed- or housebound by their symptoms. I also put out a pair of shoes for myself to represent the life I was missing due to my own disabling symptoms.

This year I’m not so sure where I stand. (Postural pun unintended for once, but sure.)

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A Letter for Health Care Providers on Graded Exercise Therapy (GET) for ME/CFS

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For those who don’t know, May is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) awareness month, at least in California. To kick it off this year, the Workwell Foundation posted the following to Twitter this afternoon (to view on Twitter, click here):

In honor of ME/CFS Awareness month the Workwell Foundation Research team has composed a letter about graded exercise therapy. Please feel free to print & distribute it widely.

The Workwell Foundation in California does research on ME/CFS with a focus on functional aspects of the disease and also offers cardiopulmonary exercise testing (CPET). Some people with ME/CFS recommend this testing as it allows them to both measure their impairment for disability applications and also aids the patient in appropriately pacing and avoiding symptom exacerbation. I won’t be discussing this for now because I have not done it (it is expensive and can induce a large crash, and frankly I just haven’t gotten around to it yet), but I very well may do it at some point, and I will write about it if/when I do!

If the above link doesn’t work, the letter can be found on their website under “Research & Latest News” or directly at this link here. It is addressed to health care providers and discusses the dangers of graded exercise therapy (GET) for patients with ME/CFS. It even has a page of references!

I don’t know about you, but I’m definitely considering sending this to all the doctors who have told me I just need to exercise more…

How I “Came Out” About My Chronic Illness on Facebook

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I spent a long time thinking about whether to post about my health issues on Facebook or not. What would people say? Would I lose friends? Could it come back to bite me in the butt later? In the end I decided that it was a risk I was willing to take. I was tired of having to explain myself to every person individually and thought this might make that easier. As it turns out, it worked pretty well! Obviously not everyone I know saw it, but I have had interactions with people after they saw the post and I loved that I didn’t have to start the story from scratch.

Another reason I decided to post about it is I saw other friends share challenges they faced (health and otherwise) and found myself grateful for their openness and vulnerability. I thought that if I appreciated their candor so much, perhaps others might appreciate my own.

I did worry that I might get some negative reactions from people, but I haven’t had anyone close to me react negatively, at least not to my face, and if anyone else saw my post and thought badly about me they kept it to themselves. Every reaction shared with me, whether from close friends or people I hadn’t spoken to in years, was positive. [Read more…] about How I “Came Out” About My Chronic Illness on Facebook