Joseph Stashko: How to (almost) disappear completely

[Nicolas the french guy]

The New York State Department of Health recently described ME/CFS as a “serious, chronic disease that affects multiple body systems, including the nervous system, the immune system, and the body’s production of energy.”

Despite this, it has been pigeonholed by some medical practitioners as a psychosomatic problem; an illness conjured up by the sufferer’s mind. We have, it seems, not learned from the lessons of multiple sclerosis, lupus and rheumatoid arthritis: all were at one point thought to have primarily psychological origins, or be heavily influenced by personality traits. This categorisation is laughable.

To have ME/CFS is like flu taking up permanent residence inside your body. Patients are crippled by a complete lack of energy, by muscle pain and weakness. Their cognitive abilities decrease, they suffer from insomnia and sensitivity to light and sound. Symptoms are shared between patients but also have different manifestations. For as long as I can remember, I’ve been a morning person, but now my body seems crushed by the weight of waking. I’ve also been plagued by constant sinus pain, tinnitus, wheezing and dry eyes. My skin has taken on a strange new texture.

Being ill like this has also had a substantial social cost: it has been sobering to see how quickly I have been erased from other people’s lives, just by not being present. I have lost many friends because I’m not well enough to meet in person, and it’s tough for them to understand what someone with a severe disease is going through and how to help them. We lack the language to communicate with those for whom illness is a long term or permanent state.

I could live with these losses — they would feel almost worth it — if I felt help was on the way. But that too is an overly optimistic view when it comes to seeking answers to this illness.

 

[Kalliope]

This was an excellent read!

 

[Trish]

That is a really good article. I hope he can get it published somewhere more widely read than Medium, which is basically a blogging site.

 

[JemPD]

Very, very good. such a good precis of the issues

 

[Sean]

I hope he can get it published somewhere more widely read than Medium, which is basically a blogging site.

We can help by spreading the message.

 

[Trish]

I e-mailed him to thank him for the article and suggested he try to get it published. He has tried, but no takers, so he decided to put it on Medium.

 

[Joh]

 

[Forbin]

I like to think that I know good writing. That was good writing.

 

[Hutan]

Yes, that was good. I'd like to read more from Joseph.

 

[jeckylberry]

Good stuff. Suitably sincerely frustrated and speaks well for his community.