Over the holidays, the ME/CFS community lost Beth Mazur – a leading member of MEAction, the biggest activist organization for ME/CFS. She was a kind and well liked member of the ME/CFS community and someone who had been suffering with that illness for many years. She died due to suicide. You can read more about Beth’s life in a post written by Julie Rehmeyer here.
It’s difficult for me to think about events like this because of my severe level of illness. Beth may have had some level of depression as well as ME/CFS, but ME/CFS often leads to a phenomenon of non-psychiatric suicide. That is, suicide that is due to intractable, terrible life circumstances and not due to mood disorders, distorted thinking, etc.
I often don’t want to talk about suicidality, due to the possibility of putting people off, but I really want people to recognize that ME/CFS inevitably leads to death in many people, when they are not given the help they need.
Whether that help is in the form of cures and treatments that would come from research funding into the illness (for context the NIH drastically underfunds ME/CFS research relative to the disease burden and seriousness); Or whether that is in the form of social support, access to specialists that can at least alleviate symptoms or some of the comorbidities, palliative care or welfare benefits, caregiving, etc.
This I don’t feel comfortable speculating on what specifically caused Beth to take her own life, but I have been thinking a lot about how we should talk about suicide in the context of this disease.
Suicide is not some generic problem we can generalize, or in which various cases are fungible.
It is not a problem that we can treat as some social ill to be fought without reference to the specific factors that cause people to take their own life. I try to avoid talking about it as something that is OK, or sometimes even the best option.
I don’t want my content to be triggering for people who have had direct experience, personal experience with losing someone to suicide or who are suicidal potentially for reasons which are found temporary or fixable. But, suicide can’t be looked at as something which is the same in in all contexts.
In ME/CFS, suicide is often a decision that people come to often is the last resort, often very reluctantly, as a way to relieve not only their extreme physical discomfort, which might be bearable if they had other things to live for, but also to end their living death.
The decision comes in a state in which they lose everything that is essential to their identity. Their ability to make art, work, or even have romantic relationships. Their ability to do basically anything that requires metabolic energy. Their ability to act or think about the world or travel. Their ability to even listen to music often or view art.
When people lose all this, and when people don’t have a way to gain any quality of life in this illness, they return to suicide, in my view, to end their suffering. The kind of suffering that leads to this choice, and the choice of suicide can’t be viewed outside of that context.
But there are things which can happen to one which are so terrible that they can cause one to do things that go against one’s own values – that can be so much more immediate and extreme than the imperative to follow a given religious or ethical law such as the injunction against suicide.
ME/CFS and the related illnesses is one of these terrible things which can end up wearing down once commitment to one’s values, such as religious or ethical opposition to suicide. Despair and grief are not the same as depression or other mood disorders.
Suicide in ME/CFS often seems to be undertaken as a rational and measured response to an extreme of physical suffering, grief, and the eventual erosion of possibilities for remission. While ME/CFS causes one to crash after cognitive exertion and causes cognitive problems, it does not cause the types of cognitive distortions found in depression and mood disorders.
So, one of the main reasons that I am generally against suicide is that suicide in depression, or mood disorders such as bipolar, is not based on an accurate and lucid calculation that one’s life cannot get better, but more often based on an impulse caused by the thought distortions and effects that accompany those psychiatric disorders, and which often can pass or be treated.
(When I say that I am against suicide generally, I don’t mean to say that I am for any measures which would restrict people’s bodily autonomy, which I strongly believe in, just that I strongly personally think that it should be discouraged whenever there is any other reasonable option)
In the case of people with ME/CFS, they have an illness with no FDA approved treatment. Usually the disease course and prognosis are fairly grim. Sometimes they have associated depression, but often not, and it’s not ever the main problem in the illness.
When they end up coming to the decision to take their own life, often they have exhausted more options and tried more desperately to recover their own health or to work for a societal/governmental change that could lead to improvements in their life, more than people outside of the community can possibly imagine.
They are not life denying, passive, annihilistic, and they do not take their life or life itself for granted. But rather have an extreme hunger for life.
Many of these people, including me, are optimists and problem solvers, who do our best to compartmentalize and not become overwhelmed with the grief or pain, but simply strive daily to find a way out of this labyrinth, whether that way is through science, through finding and working with the right specialists and/or experimental treatments, through activism, or through some attempt to deal with this spiritually.
When I hear about patients like Beth coming to the end of what they can endure and committing suicide, I feel grief for all of us, and anger toward the system that led to this.
It makes me want to explain all of these things to people on the outside because the way people look at suicides like this is so often ignorant and deeply removed from the reality of this illness.
People who think of suicide as a selfish or impulsive choice or as a weak one, have not only not dealt with what people with this illness deal with, but perhaps have never even considered that there are such extreme circumstances that make suicide one of the only ways people have out of such a living death.
I see suicide in ME/CFS, especially severe forms of the disease, as akin to someone who jumped out of the buildings on 9/11 to avoid burning and suffocating to death, or a soldier who commits suicide to avoid certain torture in captivity
So I don’t celebrate it or condone it, but I can’t condemn it either. All I can do is hope that the circumstances that cause this high rate of suicide in ME/CFS be fixed.
This starts with awareness, activism, and support from the general community. It starts with bearing witness.
P.s. I have written a longer piece elsewhere about me/cfs quality of life and mortality https://openletteropenmedicinefoundation.com/ME-CFS-is-a-living-death/
