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U.K. TV Reporter Shares 'Bone-Crushing' ME/CFS Diagnosis to Highlight Invisible Disabilities

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On Monday, U.K. ITV reporter Gary Burgess revealed he has been diagnosed with myalgic encephalomyelitis, previously known as chronic fatigue syndrome (ME/CFS). He described his “bone-crushing” symptoms before sharing with viewers how getting a chronic illness diagnosis has affected him.

In a post shared to ITV Channel TV’s Facebook page, Burgess said his ME/CFS fatigue was “bone-crushing” and “your worst hangover combined with the flu permanently.” He also described living with symptoms like “full body pain from head to toe,” times when he “cannot find the words to form a sentence” and that “his eyesight and even hearing begin to fade” if he’s done too much.

One of the hallmark symptoms of ME/CFS is fatigue, which is more than “just” feeling tired. It’s a debilitating exhaustion that makes it difficult to complete everyday activities and can’t be “solved” by a good night’s rest. Mighty contributor Siobhan Simper described the difference in the article, “The Difference Between Chronic Fatigue and Chronic Fatigue Syndrome.” Simper wrote:

One of the quickest ways to get on the wrong side of someone with a chronic illness is to try to compare your healthy tiredness to their debilitating, medically induced fatigue. Trust me when I say you don’t understand what someone with a chronic illness is going through just because you are a bit worn out after achieving things they might not come close to in their wildest dreams.

In addition to fatigue, ME/CFS can cause a variety of other symptoms, including chronic pain, issues with concentration and brain fog, sensitivity to light and sound, issues with digestion like bloating and nausea, and sinus issues. Currently there is not a definitive diagnostic test to determine if you have ME/CFS and no FDA-approved treatments.

Prior to having symptoms, Burgess said he worked long hours as a journalist before eventually reaching a point where his body could no longer work. He said he had an “out-of-body experience” during a newscast and went to the doctor the next day. Burgess needed to take off work for nearly two years because of his ME/CFS symptoms.

After getting his ME/CFS diagnosis, Burgess shared he went through a mourning process before accepting his new reality of living with an invisible illness.

“Being diagnosed with ME was like a grieving process, grieving for the old me,” Burgess said. “Until I had it myself I didn’t quite understand what a hidden disability is and how all-encompassing these symptoms are because you simply can’t see them.”

Burgess also shared one of the hardest things about having ME/CFS for him is the condition isn’t well understood. There are very few answers about how to treat it. He pointed out that with chronic illness, sometimes the medical profession doesn’t have good answers and you may need to manage symptoms over a lifetime.

“My life has changed dramatically. I guess it’s safe to say Old Gary is gone, this is now Gary version 2.0,” Burgess said, adding:

I’ve learned to appreciate being in the moment far more than I ever used to. I’m far more present. I enjoy being around my friends and family and loved ones. I enjoy simple things like the birds in the trees or the sun in the sky. Perhaps previously I was a little bit too busy and focused on what next, what next, what next, to actually enjoy what’s happening right now.

If you live with ME/CFS and want to connect with a community that gets it, post a Mighty Thought or Question to give and get support.

For more from our Mighty community, check out the following stories:

Header image via ITV Channel TV’s Facebook page

Originally published: June 3, 2019
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