Severe ME/CFS and Suicide
James and I spent almost two hours talking about suicide recently, his thoughts of suicide when he was suffering unbearably, what got him through that period, and how to talk to someone who’s suffering so much that they feel it’s their only choice.
James never wanted to die, and as far as I can tell from all the evidence available, neither do others. What they want is not to live the nightmare of severe ME/CFS/Long Covid that is robbing their livelihoods, recreation, outdoor activities, hobbies, entertainment, their relationships, close friends, the ability to have a family or, if they have one, to be with their children. They don’t want to live a life of unrelenting isolation and suffering.
HOW JAMES RESISTED THE SIREN SONG
We have no context for the ways in which James was suffering daily. ME is a neurological disease. If there was a “nerve” for suffering, this disease activates it. Like torture. He says it feels like wind blowing on a body with no skin.
He tells people considering suicide that they just need to get through the next 24 hours. He firmly believes that anyone can survive anything for 24 hours. And if you can get through that 24 hours, you can get through the next 24 hours, and so on. For him, when he was suffering the most, it was second-by-second, not day-by-day. If he could get through this moment, then he could survive the next moment. Soon he was surviving for five minutes. If he just held on, an hour would go by, and he had just survived unrelenting suffering for a whole hour. In this way he’d get through 24 hours of torture that he was unable to describe outside of saying it felt like every cell in his body was dying. He didn’t understand, and others suffering so extremely can’t understand, how the human body can endure this level of continuous neurological torture without dying.
An online friend in Europe with severe ME was discussing extreme symptoms with James, and a treatment that had helped him. The last thing this friend said at the end of their chat was, “Try not to kill yourself.” As stunning as it seems, those few words typed so casually, from one non-depressed person to another, are the only evidence we need that severe ME is so bad that people have to regularly try not to kill themselves.
ME/CFS symptoms can wax and wane. Some people can have good years and bad years. I recently saw a post on Facebook by a person with ME who was temporarily well enough to visit a friend dying of stage four cancer. When she entered their hospital room she was shocked to see the condition of this person. With stage four cancer, a terminal prognosis, and dying soon, her friend seemed so well compared to her own condition when in a crash with severe ME. She proclaimed the validity of a study we have all seen that analyzed quality of life for ME/CFS compared to 20 other serious conditions, including chronic renal failure, lung cancer, MS and schizophrenia. This study found that those with ME/CFS experience a far lower quality of life than any of these conditions cause for patients.
Many of us have known a person with cancer, or near death as they reach the end of their lifespan. Now remove their ability to enjoy even a slight glimmer of sunlight through the edge of a curtain. Keep their shades closed from the moon and the stars, also too bright. Take away music. In their long, lonely hours, deny them movies and TV. Remove their ability to have any visitor or hear any kind word. This is the life James and others with severe ME /CFS endure.
Knowing this, as difficult as it is to grasp this level of isolation, you can surely understand ME/CFS-related suicides, especially when you add to their suffering that, unlike terminal cancer patients, their families and doctors could be telling them they’re not really as sick as they claim. Family betrayal can be worse mentally and emotionally than physical symptoms and isolation. An NIH study found that suicide is by far the most common cause of death for people with ME/CFS at 26.8%, nearly double the 14.5% of the general population.
TOOLS OF RESISTANCE
I asked James about his own ability to hang on. Why live if living is so painful? Why agree to be tortured every minute of every day with a torture that, in most cases, is not fatal but feels fatal? What helped him resist death’s peaceful release?
He was torn regarding his response. He said his reason changes over time and with different circumstances. But this is still his secret weapon as he continues to be isolated from the world, trapped in the dark, in his bed:
“Find something you care about more than your own suffering.”
He is certain that anyone who focuses solely on their suffering will be vulnerable to end their life. It’s too much to bear. He feels that the concept of caring about something more than you care how badly you’re suffering is the key.
WHAT IS THIS SIREN SONG?
He shared why people want to die, why they need to die.
I had offered my own thoughts based on things he had said when he was at his worst, trapped in complete isolation. I had assumed it was the level of his isolation, far beyond what other severe illnesses require, in addition to pain and suffering which no drug or treatment effectively relieves.
For more than a year he could not endure hearing and processing my words.
When he was able to lift a plastic fork, my presence in his room for more than the moment it took to drop off his food caused pain in his brain – just my presence.
Any sound at all – even in the kitchen two rooms away – hurt him through foam earplugs and Bose noise-cancelling headphones.
For any light at all above his red-hued Phillip’s smart bulbs at 10%, his eye mask went on so I could silently do anything in his room, clean or toilet him in the bed.
He could not watch TV, listen to music, or look at more than a couple of lines of text.
Forced isolation from any normal existence or interaction with humanity goes beyond any illness anyone I know has ever encountered. It most closely resembles torture. And it lasted for more than a year.
I thought this combination of extreme isolation with severe pain and suffering was the catalyst for his daily request to “please let me die.” And he did ask to die several times a day for a very long while. But I was wrong.
It was not that torture, but the fact that there is no cure… and he could still get worse.
There are many fatal diseases with no cure. But those are diseases that the world understands, empathizes with, and validates with medical and emotional support. ME is unique. It’s rarely recognized until it’s too late to stall its progress, and then it can become fatal, but that is also rare. Most ME deaths are suicide, second in line is medical neglect—which rarely happens with any other disease.
There is no effective treatment for symptoms that cause the most suffering. Nothing has successfully relieved the pain in his brain when exposed to noise or light. Nothing enabled him to have a conversation, to connect with the world, even with me, since I could not converse, only receive that one-way conversation of needs, complaints, and requests to die.
He imagined extreme isolation for years to come. He, very realistically, considered the never-ending nature of his suffering, more than the suffering itself. Days became weeks, weeks became months, and still, a year later, nothing had helped.
“You can endure anything for 24 hours,” he said.
But having been wrong about, “It can’t get worse than this,” over and over again for the past several years, we’d all learned that it can get much worse.
HOW BAD CAN THIS GET?
There are those who cannot eat at all and live on feeding tubes. Others who must lay flat, can only incline their bed 15 degrees for a very short period, but no higher. There are those who cannot speak at all, in addition to not tolerating listening.
James pictures a waking coma. A state where he is totally incapacitated, unable to communicate, but suffering the same extreme, unimaginable pain with no way to tell anyone to stop talking, turn off that light, don’t touch him. All those things that make the pain unbearable, “like wind on a body with no skin,” would make life continual torture and he’d have no way to communicate about it, nor the ability to end his own suffering then.
The terror of this was what drove him to wish his own death while he could still ask for it, while he still had the ability to do something about it if he resolved to. But he didn’t.
He endured. He let the strength of his empathy for me and his siblings, his dream of making music again as he continued to only listen to music in his mind, and the fantasy of one day having his own family… these tools won against the existential dread of never-ending suffering.
MY JOB IN SUICIDE PREVENTION
I was terrified when James continually spoke about wanting to die. I’d stop reading in my bed at the other end of the house, fearing that at that very moment he might take his life somehow. If anyone asked me about being a 24/7 caregiver to my 100% bedridden adult son, my standard response was this: “My main job is to keep him from killing himself.” That was my truth.
Before silently turning his doorknob, I intentionally corral my chaotic life—move all of that out of my way—for the next few minutes. This shift has become natural and no longer requires effort. I stop in front of his door, take that breath, and enter, burden-free. Everything I’ve had to learn to accommodate James and his extreme symptoms of severe ME/CFS has benefitted me. Everything. But most of all, I’m so grateful for the opportunity to grow into a dimension of Peace I never would have bothered to find for myself.
In those early months I knew that any attitude that said, unspoken, “I don’t want to take care of you,” “You’re too much of a burden,” or “This is too hard for me,” could have thrown the switch from words about dying to actions. Whether or not that’s a fact, it was my fear, so my “job” was to never let a hint of bitterness surface.
BETTER TREATMENT IS THE BEST PREVENTION
When James began to do a bit better, he stopped talking about killing himself. He stopped asking for Nembutal every day, or a gun. When mentions of suicide slowed down, then finally stopped, I rejoiced. I was exuberant. I had done it. I had kept him alive. But talking to him about suicide now, I now realize how hard he had worked to stay alive. Between the two of us, it had been a herculean effort, but we did it.
For now, with a new supplement called Oxaloacetate that costs $900 every month, James is able to watch TV, to listen to music, to work on his computer and mix and master tracks he recorded years ago, even to sing softly into one of his studio mics. His five siblings send me the money every month, so it’s a sacrifice for all of us. That kind of money is unrealistic, and Oxaloacetate doesn’t help everyone, so I am counting on the hard work that must be done to develop a treatment that works for all ME and Long Covid sufferers so the suicides can end.
James still can’t look outside, even at moonlight. He still has to be very careful not to overdo it. He can’t read more than a page or two or watch a movie with too much action. But I’m sure you can imagine that after three years of silence, darkness, and nothingness, these gains are radical improvements for his quality of life.
If he ever mentions suicide these days, it’s theoretical. He knows others who have been bedridden much longer than he has been. He can’t imagine that. He also mentions the quality of his existence in years to come. He doesn’t want to live without hope for independence, a career, a wife, a family. On melancholy days, because, quite naturally days he’s not doing well physically turn into mental struggles as well, he muses on it again. And I listen. I understand. I give his leg a squeeze from the chair I’ve pulled up beside his bed. I don’t offer platitudes or act scared at his mention of it. I get it. I get it all the way from my head to my toes. I get it. I’m there to listen, and he sees that. And the subject changes.