Occupy M.E.

Last week, Johanna Haban provided some important resources and information for people with ME who are overwhelmed or are contemplating suicide. This topic is complicated and very important to discuss, so Johanna and I spoke further about issues related to suicide.

Johanna has been disabled by a number of chronic illnesses over the years, including ME. She currently volunteers with Crisis Text Line and has experience on phone lines as well. Johanna’s opinions and suggestions are her own and do not represent those of Crisis Text Line, San Francisco Suicide Prevention, or any other organization. She is not writing as an official representative of any organization.

Important: If you are in crisis and seeking help, please consider reaching out to the National Suicide Prevention Lifeline: 1-800-273-8255 or the Crisis Text Line: text START to 741-741.

Why/when did you become interested in becoming a crisis line counselor?

I first started working at San Francisco Suicide Prevention in the late 1990s. It’s a wonderful organization, one of the oldest suicide hotlines in the country, and the skills I learned there were invaluable both on and off the hotline. More recently I have been working with Crisis Text Line for the past three years. Being disabled by illness myself now, I love that I am able to continue helping people from my own home, during the hours that I choose. If you have any interest in becoming a counselor yourself and especially if you are disabled, I highly recommend reaching out to Crisis Text Line. The training is superb, you are supported at every level including while you’re working, and there are many counselors with a range of disabilities due to the excellent accessibility.

Are suicidal thoughts common among people with serious and/or chronic disease?

In my experience, yes. Many of the people I’ve spoken or texted with have at least one chronic physical illness, sometimes more and sometimes exacerbated by mental illnesses. Another aggravating factor is social: so many people with ME are isolated, sometimes having lost friendships and the care of family members due to their illness.

It is very important, however, to recognize that there is a world of difference between saying “I want to die” versus “I’m going to kill myself.” As I said in the earlier post, when you’re experiencing a morass of such unutterably painful things, it’s entirely natural to want that to end, and if it can’t, then to think about ending your life to make it stop. And it is okay to feel that way!

People who say, “My disease is so bad, I just want to die,” may never even consider actually committing suicide. But they might be unfairly stigmatized and even hospitalized when they speak out. They’re the ones whose friends and family get angry or dismissive because they don’t want to “encourage” those thoughts but rather eradicate them. But these patients also the ones who are most capable of taking care of themselves mentally and emotionally. It’s a brave thing to reach out for help — a bit of a cliche at Crisis Text Line, but only because it’s absolutely true, and should be recognized and applauded, not ignored or berated.

Among the danger signs for someone who is at a high risk for suicide is whether they’ve formulated a plan, whether they have the means or access to carry out that plan, and especially if they have a time frame in mind (and that’s either within the next 24 hours or possibly on an anniversary of some event). Patients often have a full dispensary in their medicine cabinets, so for many, means and access might be a given. Nevertheless, the most important thing to know is whether the feelings of suicide are desires and ideation, or a concrete plan. If you or someone you care about has formulated a plan, then please reach out for help!

I’ve heard some people say that the worst thing a suicidal person can do is to call a crisis line because they will automatically call the police, or because they’ve heard counselor horror stories. What do you think about that advice?

Warning other people away from resources like crisis hotlines is not the answer. Period, full stop. I personally feel terrible for someone whose experience was so bad that they feel this way, and I wish I had been the one to talk to them. But whatever happened to one person is not going to happen to everyone who uses these services, and sometimes they are literally the line between life and death.

Counselors are only human, and although everyone gets the same training, not everyone is really going to understand about chronic illness. A counselor may get on the wrong track with you, or say the wrong thing. The important thing to remember is that a conversation is a two-way street; in other words, the counselor is not the boss. You don’t have an obligation to continue with a conversation that is unhelpful or even harmful to you.

There are a few things you can do if the conversation isn’t working for you. It can take a little time to develop a rapport with a counselor, either on the phone or via text, so try to work with them to make that happen first. As a counselor, I don’t want to say this, but as an advocate, I have to: you can always end the conversation without saying anything further. This is by far not the best way to handle it, but if you absolutely must, then you should. If possible, you can tell the person that you’re feeling sleepy or you have something to do and you have to go. You don’t have to elaborate.

If you feel that the conversation could be better if something changed, and you feel comfortable saying so, absolutely do so. For example, perhaps all you want to do is express your feelings but your counselor seems focused on finding some help for you. Or the opposite: you’d like some referrals to places that could help but the counselor is focusing on your feelings. You can say something like “Thanks for offering those websites but I really just want to vent,” or “I’m doing okay emotionally but I’d like some more practical help with [such-and-such].” A good counselor will be happy to oblige you in making your conversation as helpful as possible.

Crisis Text Line and other hotlines offer the option to fill out a short survey in which you can detail the problems. You can also contact any hotline outside of their emergency number (via their website, for example) to share your experience and what you feel went wrong. This is a very constructive way to actively help the organization improve. If the problem has to do with a poor understanding of chronic illness, by all means say so. It might even lead to a change in training on that topic, if necessary, so your negative experience can actually help others.

What should patients expect from their healthcare providers if they have suicidal thoughts?

Patients should be very careful about how they express themselves, for the reasons we’ve discussed. Not every physician is going to understand that “I feel suicidal” does not mean “I’m about to kill myself so please lock me up.” I wish I could say to be honest with all your providers about these things, but sadly that’s just not practical advice. If you can identify one of them who is likely to be supportive, it would be good for at least someone on your healthcare team to know that you’re experiencing these feelings.

When I talk to people who want to tell, say, a parent or a teacher about their feelings, I often encourage them to start by making it clear that they are not about to kill themselves and just want to discuss their feelings. Sometimes it’s even easier to write it all down rather than starting a conversation, because that way you have complete control over how the message comes out with no fear of getting interrupted or blindsided. It’s a bit ridiculous that suicidal people have to think about how to navigate other people’s feelings when they’re trying to get help, but it’s the safest way to avoid unwanted consequences as long as the stigma concerning the very word “suicide” still exists.

Do we talk about suicide enough/appropriately in the ME community? What needs to change?

I think in general, because we have lost so many of our friends and loved ones with ME to suicide, the topic gets discussed more openly and more often than in other communities. There’s a better understanding of the reasons why patients become desperate, for one thing, and personally I don’t see nearly as much moral or religious judgment as I have in other, non-illness-related forums.

However, there is one thing that absolutely needs to change if we are serious about wanting to attack the stigma in our community, and that is the secrecy that surrounds a patient’s suicide. Many people feel that it is up to the family to decide whether this information is shared with the public and that it is a matter of privacy. This means that nothing significant will change or improve for other patients. As long as suicide is still swept under the rug, expressed in euphemisms like “died suddenly,” and remains information that trickles down only to an inner circle, the conversation will remain stagnant. As long as people assume that it is this or that illness that was the cause of someone’s death and not suicide, other suicidal patients will retain the awareness that their feelings are something shameful that should not be discussed. However, if the community is allowed to know about it when a patient ends their own life, then and only then will we see the full force of what open, compassionate discussion can achieve. Whom are we protecting when we talk about “privacy”? Why is such privacy necessary when we know there is nothing wrong, evil, or indecent about the feelings that cause a patient to suicide – but that there is a great deal of danger when those feelings are covered or bottled up? I strongly believe it behooves those nearest and dearest to patients who have killed themselves to share their struggle with other patients in the hope of saving other lives.

What can caregivers do to help loved ones who have suicidal thoughts?

Years ago when I told my “CFS doc” that I thought I might be depressed, he said “It would be surprising if you weren’t.” I’m not sure he knew how validating that throwaway comment was. It told me that what I felt was normal — something patients very rarely hear!

So the best thing that caregivers can do is to normalize those thoughts. Hearing about suicide from a loved one may spur feelings of panic, loss of control, anger, and other negative emotions. Again: it is okay to feel these things. But it’s very important to do your best not to communicate them to the patient. Instead of saying, for example, “Don’t say that, I don’t want to hear that,” you might say, “That’s a scary thing for me to hear but I understand why you feel that way.”

Encourage discussion of those feelings. Not only are you helping your loved one at that moment, you’re also letting them know that you are a safe person to talk to if things ever do get worse. Too many times the negative reactions from friends and family cause people with suicidal feelings to pull away from them and no longer see them as a source of support. This fosters the isolation I mentioned earlier and makes it much less likely that the patient will reach out before they get to the point of hurting or killing themselves.

What is the best way to respond when a person expresses suicidal or desperate thoughts?

I’ll say it again: if someone mentions suicide or feeling suicidal, take it seriously and listen to them, but don’t make any assumptions about the level of danger they are in. I don’t want to oversimplify things, but there are some Do’s and Don’t’s:

• Do encourage people to reach out to a crisis line to talk about their feelings.
• Do empathize with the person, and ask what is troubling them the most.
• Do honor the person’s request to keep a conversation private, unless you know for certain the person is going to end their life in the next 24 hours and intervention is literally the only hope.
• Don’t use the word “committed,” as in “Are you thinking about committing suicide?”
• Don’t bring religion into the discussion unless the patient brings it up first. If you must bring it up yourself – let’s say if you’re brainstorming people the patient might be able to turn to and want to know if they have a spiritual leader – use a neutral question like “Do you find religion helpful?” and if the answer is no, simply drop the topic.
• Don’t make threats, like “if you keep talking like that I’m going to call the police.”
• Don’t give them reasons to stay alive – talk to them about what their reasons to stay alive might be.
• Don’t pile on the guilt; suicidal people are already buried by it.
• Don’t problem-solve unless the patient is open to it. In other words, don’t jump on how to solve a particular problem that’s mentioned, just listen to it and offer your sympathy and empathy.

What do movies like Me Before You communicate to chronically ill/disabled people?

Me Before You is a story of a man who becomes paralyzed from the waist down in an accident, and ultimately kills himself so that his “life-affirming” girlfriend can inherit a bunch of money. It’s part of a proud Hollywood tradition of jerking tears out of characters who become disabled and then off themselves, or have someone do it for them as in Million Dollar Baby.

Here are some things we learn from this:

1. Your loved ones are better off without you if you are not a perfect physical specimen.
2. Your life is worth no more than a certain sum of money.
3. There is no point continuing to live if you become unable to function exactly as you always have.
4. It’s better to be dead than to be a hot rich white guy with a hot adoring girlfriend and a pair of legs that don’t work.

Hollywood loves these stories because they’re a form of inspiration porn, a term coined by disability activist Stella Young. (Please check out her TED Talk) It’s the way nondisabled people use disabled people to make themselves feel good, in a way that completely ignores or eliminates the disabled people’s identity and personhood. Admiring these “sacrifices” (a really disturbing term in this context if you think about it) is one way for nondisabled people to reject the presence of disability in society.

So besides the constant messages from family, friends, physicians, institutions, and the general public that we are burdens to society, Hollywood delivers a message of worthlessness on a regular basis. And unfortunately, when a movie does occasionally send a much better message, it’s not often done particularly well. Regarding Henry is the story of a man rebuilding his life after a serious brain injury, but it’s so coated in schmaltz and unsubtle moralizing that it’s hard to watch, despite a laudable message.

The best kind of inspiration is where it’s the disabled person in the spotlight doing amazing things for other disabled people, and not just existing to make the lives of nondisabled people happier. The movie Breathe is a good example of this.

Is there a difference between “right to die” decisions and suicide? How can we tell the difference?

There absolutely is and it’s extremely important. The two things have been conflated badly in all kinds of settings, from mainstream media (see the above discussion) to activism, and it’s another place where I see a lot of judgment about people’s opinions and personal decisions. There is an idea that any kind of right-to-die initiative is a slippery slope towards eugenics and the wholesale slaughter of disabled people.

Generally speaking, right-to-die decisions are made by patients who have received a terminal diagnosis. They are facing a slow, painful death in which they will lose their mental capacity and/or all control of bodily function. The places in the U.S. and other countries where this is legal do not simply say “yes, go right ahead, here’s the drugs you need.” There is a long process of physical and psychological examinations to determine that the patient is making a clear decision on their own that is not influenced by other people or a disordered cognitive process. The idea behind this is that the patient makes a conscious decision to die while they still remember who they are and who their loved ones are, and are not yet in such pain that they can no longer function. Hence “death with dignity.”

Some patients, without access to these programs or the desire or capacity to wait, take matters into their own hands. Robin Williams was facing a slow and horrible death due to Lewy body dementia (LBD), sort of a combination of Alzheimer’s and Parkinson’s. He chose to end his life before falling into the grip of the disease.

Everyone is entitled to their own views on these matters, as they are by no means black and white. For me, though, things change depending on whether the illness is chronic or terminal. I believe there is a difference between facing life with a painful, disabling, isolating illness and facing a sure and undignified death. I know that the two may feel like the same thing on some days. But there is still a difference between facing life and facing death. And the suicides by people with ME and similar conditions are a tragedy and loss that our community should not find acceptable or inspirational.

ME is not a terminal illness like cancer. That is not to say people don’t die from the complications it directly causes. But it’s not an automatic death sentence. Choosing to live with this illness is hard, really hard. Just opening your eyes every morning is an act of bravery. It doesn’t make your life cheap and worthy of tossing away, though; just the opposite. As a disabled patient and as a crisis counselor, I sadly respect the decisions that people like Robin Williams make in order to avoid completely losing their agency and personhood. But where life can continue, more than anything I believe it should continue.

The American Association of Suicidology put out a press release in November 2017 to distinguish between suicide, the prevention of which is within their purview, and physician aid-in-dying, which is not. Dr. Margaret Battin, Distinguished Professor of Philosophy and Adjunct Professor of Internal Medicine, Division of Medical Ethics, at the University of Utah, says the following: “Many factors create a clear distinction between the two phenomena, including intention, absence of physical self-violence, the physician’s assessment that the patient’s choice is not distorted by mental illness, a personal view of self-preservation versus self-destruction, and by the fact that the person who has requested aid in dying does not typically die alone and in despair, but, most frequently, where they wish, at home, with the comfort of his or her family.”

How can we better address the problem of suicide and/or the desperation that can come with ME?

In general, the things that I’ve mentioned regarding how to support anyone with a serious chronic illness and suicidal feelings should apply. Caretakers and other people in the patient’s life should be less ready to assume the worst, and more open to hearing what the patient has to say. Patients should try to respect themselves and their own feelings regardless of what negative messages they receive (from others or even themselves).

ME is a special case, though, in my opinion. People with other illnesses like cancer or lupus don’t go through the extra stress that comes with having an illness many people, including physicians, have either not heard of, don’t believe in, or have wildly incorrect views about. As an MS patient, I’ve never been told my brain lesions are the result of my own laziness, or that losing weight will get rid of them. I’ve never been blown off as merely depressed, and when I talk about my symptoms they aren’t ascribed to things like the weather changing.

People with ME struggle with another stigma, that of their own illness. There’s the long history of funds supposed to go to research being misused (or not showing up at all), not to mention scams and bad science like the XMRV fiasco which cost patients thousands of dollars that lined researchers’ pockets. There is a total lack of respect for the illness and for the patients who suffer terribly from it, at every level from institutional to individual. Patients are endlessly made fun of, ignored, mocked, blown off, misdiagnosed, and shunted aside, by research institutions, researchers, physicians, psychologists, parents, friends, and the general public.

Since I was diagnosed with MS, I’ve been on a DMT (disease-modifying therapy) that halts the progression of the illness. People with ME have no such light at the end of their tunnel currently. I believe this is why the community sees such a devastating number of suicides compared with other illness communities. And where are these patients supposed to turn, when all those people I mentioned above don’t even believe they’re really ill? Or when there’s so much dissent and aggression in the community itself that patients don’t feel comfortable talking about their personal problems even with other patients?

I wish I had an answer other than the one that patients have been working on for decades: to legitimize ME across the board in medicine. I wish I had a better answer as to how to do that than all the people who have devoted their lives – some of them devastatingly short – to making this happen. And I wish I could see things getting better for patients before this takes place…but I don’t. Until ME patients are treated with the care and respect they deserve, that anyone else as sick as they are receives, those extra feelings of desperation and pointlessness will continue to plague the community.