Severe MECFS and Reasons to Live (TW: Depression, Severe Suffering, Assisted Suicide)
Depression and grief is a common features among MECFS patients. The more severe your illness the more likely you are to suffer from this. It is a perfectly natural response to the incredible loss and stress of living with severe pain, fatigue and mobility limitations. For help coping see my posts on ACT and surviving low mental health days with severe ME.
This post will go beyond short-term survival and focus on ways people with ME have managed to find meaning and purpose in limited life.
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Crafts and Low-Intensity Hobbies
Making things feels good. One of the primary reasons losing productivity is difficult is that it can feel like we are not contributing to the world in any way.
Unfortunately when living with severe chronic illness, making contributions in ways that are monetarily rewarded is often impossible. However, crafts and hobbies that involve creativity can still provide the internal reward of knowing you have improved the world a tiny bit by sharing your creation.
Some common hobbies include painting, sewing, jewelry making, poetry & writing, and music.
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Family & Emotional Support
One extremely common thing I hear on severe ME forums is how if it weren't for their children, family or pets people simply wouldn't stick around. While this is often seen as very depressing, to me it is actually uplifting.
The fact that we live in a community and have people who love us and whom we love back is a powerful reason for life. Even infrequent and clouded communication is more than the communication we have with the dead, and our loved ones appreciate that.
While people with severe illnesses often feel like they are burdens, I think we deep down must understand that we are not. We intrinsically know that our deaths would hurt those around us more than our lives.
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Online Friends & Community
In addition to close loved ones, many people with severe chronic illness spend large amounts of time online. From my personal experience with disabled people online, I certainly believe this is a powerful contribution to society.
Severely ill people provide a unique perspective on the world. We often comfort others and have a strong sense of empathy. Because we are so often denied basic compassion, we are fast to extend that compassion to others.
The spoonie (chronically ill) community itself is often held together by the severely ill. More than anyone else we know the importance of learning to value ourselves outside our productivity and by creating and participating in community that supports this, we both give our own lives meaning and remind others how meaningful their lives are.
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Video Games, Media, Escapism & Witness
For many severely ill patients, almost all forms of participation in the world are impossible. For those with severe neurological decline, creativity and maintaining social relationships is simply beyond feasibility.
So why live in a world you are not part of? Well, one reason it simply to bear witness. Consuming media and art, seeing the progress of technology and society, these are experiences unique to sentience. For many, the reason to live comes down just to curiosity: what in the world will happen next?
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Advocacy and Fighting for Others
I often find that even when I am completely out of the energy and will to help myself, there is a secret reserve of energy left in me that helps me fight for others.
Many people with severe illnesses know that they are beyond the help of any modern treatments. That the cyclical reinforcement of their symptoms makes remission impossible, or that their trajectory is almost certainly terminal.
But often, we have learned from our mistakes. We know that there are others like us who are not yet too sick to be saved. Or we know that even if we may not live to see a cure, we might be part of bringing it about for others.
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Gathering Data and Research
Despite all these reasons, there are still people for whom none of this applies. Whose lives have been so shrunken and darkened that no community, no sharing, and no witness is possible. But even when active advocacy is impossible some continue to live so that their passive bodies might provide the data and research that gives life to others.
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Living as Protest
Finally, there are those who have been neglected in every way. Who are living dead, alone, and with no way to communicate, share, or help anyone, including themselves. Society has told these people to go die. Many do. But some, out of sheer force of will do not. Their lives are a true act of protest. A reminder to all that life finds a way, and that you cannot simply decide that we are worthless, you cannot just throw us away. These are some of the strongest people on earth.
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Acknowledgment: Right to Choose (TW assisted suicide)
Finally, while this post is full of reasons to live, I must acknowledge the truth that there are also reasons to die. Pain and suffering in severe illness can reach levels no healthy person could ever imagine or comprehend. No matter how powerful and omnipresent reasons to live are, severely ill patients deserve the right to choose. These reasons to live are in no way inconsistent with my position on assisted suicide (see past post).
Hopefully, this post shows why "if I were that way I'd kill myself" is such an awful thing to say about anyone, no matter how severe. That it shows you the reasons to choose life, and that you can perhaps glimpse a tiny sliver of why people choose the lives you see as unlivable.
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Suicide is one of the most common causes of death in severe ME and very Severe ME or Myalgic Encephalomyelitis.
I strongly support the right To Die and death With Dignity provided by access to the choice of VAD, MAID and assisted suicide in people with MECFS or any other unbearable, incurable severe Illness. But for those who live outside of this chronic illness, the extreme suffering and chronic pain we endure may seem incomprehensible. How can it both be true that we are in so much pain, and also that we choose to live on? Particular for those who are bedbound and extremely severe.
I hope that this post will shed light on the long-term meaning that people with severe disability can find long-term in our lives. These sources of meaning will not always be enough for everyone but if you are newly diagnosed with long covid or have recent become severe, I hope you will consider them deeply.
For those who are healthy, I hope the variety of these reasons and their disconnect from physical state and suffering help you to better understand why disabled lives matter and we are disabled not disposable. Why "if I were that way I'd kill myself" is never appropriate to say to someone else, even if many people in their circumstances do choose death.
Because there is nothing more personal that the choice to live or die and people's reasons for living are rarely as simple as hedonistic pleasure. Connection, creativity, and collaboration are all essential parts of life that can continue despite extreme pain.
It is not our job to choose what purpose other people's lives take on. Only the person suffering can determine if their suffering is worth the meaning they can derive from life. But we should at least seek to provide everyone the opportunity to make well-considered, independent, and fully autonomous choices. This means providing financial stability, caregiving, healthcare, palliative care, and when all else fails death with dignity.
For my stance on assisted suicide in severe ME more broadly as well as a guide to coping skills for mental health in severe ME patients see my past posts.
