Suicidism & MECFS : Not Just Stigma

The Basics

Suicide is one of the leading causes of death in MECFS accounting for possibly 20% of deaths.*

Suicidism is oppression and discrimination faced by people who are suicidal.

Suicidism silences conversations about suicide, takes away basic human rights from those deemed suicidal, and harms suicidal people.

Suicidism prevents the ME community from meaningfully discussing the topic of suicide and assisted suicide leading to more deaths from suicide in pwME.

Not all suicide in ME is driven by mental health crisis. Severe medical and societal neglect as well as unbearable and unrelievable pain may drive rational ME patients to the point of suicide.

The only way to fully prevent suicide in ME is to improve access to medical treatment, palliative care, and hope in the form of research.

*pubmed.ncbi.nlm.nih.gov/16844674/

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What is Suicidism?

Suicidism is the oppression of people who are suicidal. This includes people with both passive and active suicidal ideation.

Examples of suicidism include:

•Prohibition or censorship of posts discussing suicide on social media or conversation in real life.

•Forced hospitalization or drugging of people who are suicidal.

•Discounting peoples lived experiences and testimony because they are suicidal

•Innability to discuss suicide with therapists due to threat of forced hospitalization or medication.

•Job loss or school expulsion after suicidality or suicide attempt, often under guise of "mental health protection."

•Assumption that all suicidal ideation must be irrational and that the goal of helping suicidal people must always be to stop suicide and suicidal ideation.

•Laws criminalizing anyone who assists suicide forcing suicidal people into violent and lonely deaths.

Suicidism is more than just stigma against suicide, it is laws and social structures that prioritize liability and "prevention" over actually listening to and helping suicidal people.

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Why does it affect the MECFS community?

Suicidal thoughts are extremely common within the ME community as is death from suicide. In fact, it is common for support group comments to advise the newly diagnosed that EVERY person with ME will go through a period of depression and suicidal thoughts. While I do not believe this is quite true, certainly it is an extremely common experience and makes the ME and severe ME communities some of the safest places to discuss suicidality.

Yet you will also notice a trend in the comments, every veteran member will preface their comment relating to the new member with "I'm not suicidal anymore but..."

I do not doubt that for many this is true. They were able to learn to accept their illness and improve their mental health. But that is not what drives these comments. What drives the comments is the knowledge that if you are suicidal you are vulnerable.

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How does it harm?

Medical suicidism is deeply harmful to those who report being suicidal without understanding the risk.

Patients with ME who are depressed absolutely need to receive mental health treatment. But unless they are very mildly affected, it is essential that said treatment accommodate their ME.

Patients with severe ME have been killed in psychiatric wards. Being suicidal immediately qualifies patients to be held against their will in psychiatric hospitals.

Veteran MECFS patients have learned that it is simply too risky to be openly suicidal. They will only resort to being truthful about their mental health with people they trust deeply or in absolute crisis.

This all leads to not accessing mental health support earlier when it is most helpful. It also makes suicidal people with ME feel alone which increases their risk of suicide.

Additionally, the stigma surrounding suicide is deeply harmful to the grieving friends and families of the huge proportion of ME patients who die of suicide.

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Harm Reduction

All MECFS patients concerned about suicidism should have a mental health practitioner who is safe for ME patients and willing to work with and defend them.

Very few suicidal patients actually require hospitalization. Additionally, if patients are allowed to talk about suicidal thoughts earlier they are likely able to manage them with telehealth counseling and/or medication management at home where low dosages and slow tapers can be utilized.

If patients are truly experiencing a mental health crisis then they should be supervised at all times. If this is possible at home that is best. Sometime sedation at home may also make this possible. But it is often not possible or desired and hospitalization may be necessary.

Patients with a strong existing mental health practitioner or team will be much better equipped to deal with hospitalization.

Regardless, patients needing hospitalization should come prepared by printing out the NICE or Mayo Clinic guidelines on MECFS. If possible they should also have prepared letters from their doctors and/or therapist in advance of hospitalization.

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Severe ME & Suicidism

It is well known that solitary confinement often causes suicidal thinking. Severe ME and very severe ME patients often face solitary confinement for months, years or even decades.

Additionally, severe ME patients may struggle to access mental health support because of severe energy impairment and limited ability to communicate.

All this leaves severe ME patients very likely to be suicidal.

This mental health struggle is then often used to dismiss and deny the severity of their condition.

Suicidism produces this response. If suicidal thoughts are never normal or rational than having them must illustrate mental illness.

But a non-suicidist perspective is that perhaps there are some scenarios like solitary confinement in which suicidal thoughts are the normal response. That while suicidal thoughts in these scenarios may not be desirable, they do not reflect mental illness.

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Rational Suicide & MECFS

Suicidism would have us believe there is no such thing as a rational suicide. A rational suicide can be considered a suicide not made out of distorted thinking but rather from rational conclusions about someone's quality of life and prognosis in their circumstances.

In cases where ME patients face an extremely poor prognosis, comorbidities, societal and medical neglect and more, while by no means universal, it does not require mental illness for someone to choose suicide.

It is unknown what proportion of suicides in ME are rational and which are made with distorted thinking. Many likely involve both.

Furthermore, we do not know how many rational suicides are only rational due to medical and societal neglect. However, the existence of assisted suicide cases such as Pamela Weston, Anne Ötegren, Cindy Shepler, and others with financial privilege granted as prove that suffering cannot always be alleviated by monetary or mental health support.

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Rational Suicide Prevention

Rational suicides cannot be prevented by suicide hotlines or standard mental health support because it is not driven by a mental health crisis. It is driven by material conditions and physical suffering.

Thus the only way to prevent and reduce rational suicides is to provide material relief. This mean providing palliative care, necessary caregiving, and monetary assistance to people with ME. It also means providing treatment.

The prevalence of rational suicides in ME patients and particularly severe ME patients is a strong indicator of the desperate lack of support faced by this community. The lack of treatment also contributes strongly to rational suicides. Thus research into ME and particularly severe ME is suicide prevention.

Suicide is a choice in the way that jumping out of a burning building is a choice. Current suicide prevention tactics are like fencing the person in to be burned alive. What we should be doing is trying to put out the fire.

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Important Notes:

I am not a mental health practitioner and all advice is based on my perspective as a patient and ME advocate. None of this post serves to diagnose or treat any mental health condition.

I am not actively suicidal and have stable mental health managed by a therapist and psychiatrist. Please do not endanger me by interfering with my mental health treatment.

ME is in the vast majority of cases a fluctuating disability. Definitive prognosis is impossible to provide. Significant research is finally being done into post-viral illness after decades of neglect and we do not know when a breakthrough will happen. If you are able to survive with this illness I deeply encourage you to persist. See my mental health highlights for ME specific advice.

Suicide is a permanent decision. Do not make it without seeking mental health support and every avenue of life improvement available to you.

That all suicide is bad is suicidism, that unnecessary suicide or death of any sort is bad is common sense.

If you are in mental health crisis call someone and if possible do not remain alone.

Non-carceral mental health resources are available! See @PeerSupportSpace @DandelionHill @ProjectLETS

@CallBubbie @YarrowCollectiveColarado

Learn more about suicidism from @TheSuicideDoula @MercifullyMad @TheBookSmartBimbo

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Suicidism is the Systemic Opression of suicidal people through laws and social structures that prioritize liability and "suicide prevention" over actually listening to and helping suicidal people.

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Suicide is a choice in the sense that jumping out of a burning building is a choice. What we should be focused on is putting out the fire.

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Suicidal people, such as severe ME (Myalgic Encephalomyelitis) patients, have valuable testimony on how our society is failing people. Let's start listening.

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While suicide is no longer a crime, it is still often treated as such, even down to the term "commit" suicide.

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In the MECFS community despite the fact that preliminary data found 20% of MECFS deaths are from suicide, it is often undisclosed when someone does die this way. This increases the stigma and prevalence of suicidism.

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Suicide is the endpoint of many MECFS patients. The statistics show that many people would rather die than endure the most severe stages of this illness.

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Furthermore, many very severe patients are unable to commit suicide because of their severity. So the statistics likely underrepresent how many people would have chosen suicide if it were available.

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Suicide only occurs when disease becomes unsurvivable to someone with the care available to them. Just as we would not pass judgement on someone who died of cancer, especially if they died of medical neglect of their cancer, we should not pass judgement on those who die of suicide.

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Death is bad. Death from suicide is bad. But the cause of death in ME suicides is often not suicidality or mental illness. It is the reality of the neglect and horrid conditions we force people with this illness into.

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Suicidism only serves to protect those who would rather we focus on stopping suicides through incarceration and criminalization than focus on the root causes of suicide.

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Palliative Care is suicide prevention. Social Care is suicide prevention.

Disability Justice is suicide prevention.

Research For MECFS is suicide prevention.

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What do we really want? A world where people can't kill themselves, or a world where people don't want to?

To learn more about the queer crip approach to suicidism I highly recommend this free book Undoing Suicidism by Alexandre Baril available at: https://temple.manifoldapp.org/projects/undoing-suicidism