In recent months, as the severity of my ME/CFS has increased, so has my involvement on several social media platforms. From what I have seen and read, I feel compelled to continue sharing my thoughts on life with untreatable illness.
Lately, I’ve felt particularly driven to weigh in on my views of the DIY nature of both ME/CFS and Long Covid: ignored and trivialized diseases which cast sufferers into unfathomable trenches in which we must hand-build our own defenses with whatever dirt, mud, sweat, tears and sheer desperation comes our way.
I recently asked a question on Twitter regarding why ME/CFS symptoms are, for so many sufferers, more prevalent and disabling in the morning, with symptoms lifting and energy levels rising as nightfall approaches. I received many hypotheses in response: cortisol, histamine, hydration and so on.
photo by Nsey Benajah
The response that struck me the most though did not include any attempt at an answer. It simply was a Twitter user reflecting on the absurdity of how we all must figure this out on our own due to catastrophic gaps in research, funding and concern among government bodies regarding post-viral diseases.
Reddit is another place where the atrocious DIY nature of ME/CFS and Long Covid is glaring. I have read some truly heartbreaking posts. A young mother who resorted to using meth after a new doctor refused to prescribe her the appropriate dosage of Adderall now fears her child will be removed from her care due to her one-time experiment with the illicit drug. I’ve read about sufferers using Viagra to increase blood and oxygen flow to the brain, throwing caution to the wind regarding side effects.
In my own desperation, I even tried this myself. When the Viagra I ordered online failed to help, I had to have a male friend get on the phone using the pseudo name “Michael” O’Shea to cancel the recurring order. (My/his permission was needed, and I was nervous about disguising my voice.) My point being you just can’t make this stuff up.
In my experience, it’s myself, not my doctors, who recommended low dose naltrexone and later, low dose lithium. During my next appointment, I plan to ask about Metformin, yet another medication I learned about via social media.
Other Reddit and Twitter posts I’ve read reflect an even greater degree of devastation. Users on the sites report what we call “timers,” referring to how long we are willing to stay alive if no treatment or personal improvement manifests: five years, three years, six months. So many have put a threshold on just how long we can keep doing this before making a permanent exit. I’ve seen posts from devastatingly ill individuals forced into homelessness, living in cars and pondering how to end their lives. On both Twitter and Reddit, the availability of medically assisted suicide is a frequent topic of discussion among ME/CFS and Long Covid sufferers. Canada’s Medical Assistance in Dying (MAiD) and Switzerland’s Exit International are mentioned often.
We are not being dramatic. Post-viral illnesses can result in an astoundingly poor quality of life. Despair, desperation and rage are ever-present. In my experience, I have slammed my fists into walls, onto coffee tables and counters, breaking blood vessels in my hands and bruising my arms. I have thrown phones and remote controls across rooms, all the while inwardly screaming.
Indeed, ME/CFS, Long Covid and other post-viral diseases often feel like a living death. It’s an indescribable sensation of living inside a body that has become a corpse. If only the heart would stop beating, what a relief it would be to fall finally and forever into the grave, closing the doors on this unrelentingly cruel existence.
One night last summer, I found myself leaning against the kitchen counter muttering to myself: “I’m not alive right now. I’m not alive anymore.”
Another night in September of last year, I was on the phone with my father, telling him that I may need to start getting my affairs in order.
It is not unusual on these social media platforms for users to write farewell posts, thanking everyone for their support and concluding that they just cannot bear to go on.
Growing up, we are taught that doctors are healers to be revered for their nobility. Never did I think their practices could be so useless or even harmful, leading so many desperately sick people to rely on each other and share DIY methods on how to heal and get our lives back.
—Bridget O’Shea