The list of people with ME who have taken their own lives is too long.
Fortunately, there is help available for anyone in crisis, and their loved ones. There are many issues to discuss about suicide and end of life, but I want to give you the tools and information you need to deal with a crisis right now.
Johanna Haban 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. She shared her perspective with me, to pass on to you. 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. If you are in crisis and seeking help, please see the list of resources below.
Who can I call if I am feeling emotionally overwhelmed, thinking about suicide, or am worried about someone I love?
- National Suicide Prevention Lifeline: 1-800-273-8255
- Crisis Text Line: text START to 741-741
- Warmlines (listing of peer-run hotlines all over the country)
- MDJunction (online support groups)
- HealingWell.com (forums and chat)
What happens when I call?
The goal of counselors on crisis lines is to help you cope with how you are feeling, and help you figure out what (if anything) you can do for help. Calls are confidential, and you decide how much information to share with the counselors. You do not have to be suicidal to call.
Will a crisis line report me to the authorities?
Many people are scared to contact a help line because they are worried about the police coming or being committed to a psych ward. These are very understandable fears and I hope I can ease them. Unlike the rest of the world, even including close friends and loved ones, hotlines are a completely safe space to talk about suicide and suicidal feelings. There is no judgment, there are no assumptions, you can say how you feel without anybody getting scared or worried.
Counselors may notify authorities if someone is in immediate risk of killing themselves and all other attempts to help the person have been exhausted. The signs of immediate danger are whether the caller has 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.
However, even if the signs are all there, on the two hotlines where I have worked, it’s still not any guarantee that authorities will be notified. Believe me, nobody wants to do that! It is a very last resort when a person in crisis is going ahead with their plan and there’s nothing else that can be done, and additionally supervisors and other people in charge need to be notified and informed first so that they can make the decision to send out the authorities.
In other words, you can express whatever feelings you need to express, no matter how bad or scary they are, without fear that someone will assume you need to go to the hospital. In fact, if you don’t feel like you’re in immediate (as in the next hour or so) danger of hurting yourself, and you just really need to talk to someone about these feelings, you can even let your counselor know that and be extra assured that you will be supported emotionally without any fear of negative consequences. This is just a suggestion, though; if you aren’t able to express that, it doesn’t mean you’re more likely to have the police come to your house. It just means that during your conversation, your counselor will still be making sure that you are able to stay safe.
Will a crisis line counselor understand what it’s like to have ME or other serious diseases?
Many of the people I’ve spoken or texted with as a counselor have at least one chronic physical illness, sometimes more and sometimes exacerbated by mental illnesses. It’s common for people coping with illness to feel emotionally overwhelmed, and that’s what counselors are trained to deal with.
When I was working on the hotline, I once took a call from a person who was suffering from chronic illness and a number of other exacerbating issues. They told me repeatedly, “I can’t take it anymore. I don’t want to live like this.” But when I asked “Are you suicidal?”, the response was a shocked “No! I’d never do that!” This was the first time I encountered someone who sounded intent on suicide, but really just wanted someone to hear how much pain they were in. This is one of the most important lessons I can share with you.
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. Even if you never have the slightest intention of doing it, at times the notion can be powerfully comforting. And here’s the part nobody wants to tell you: that’s okay! You are allowed to feel that way. One of the worst things about having suicidal thoughts is the guilt that accompanies them. It’s good, in a way, to feel guilty about leaving people behind if you were to kill yourself, because that would indeed be devastating. But there’s no need to feel guilty just because you’re thinking about it. It’s okay to feel the way we feel, as long as we reach out if those feelings become more like plans and decisions.
My friend/loved one is saying things like “I want to die.” What should I do?
Say something like: “I hear you. I don’t blame you at all. I completely understand why you feel that way. Did something happen recently to make things worse? Tell me what’s the most unbearable thing for you right now.”
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. If they ask you to keep the conversation private, do not break that trust 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. The idea is to make sure the person knows they can come to you with these scary thoughts and you won’t make things worse for them.
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. If, however, the patient is open to seeking solutions, by all means work with them to find what you can.
And if you are unsure what to do or feeling overwhelmed by your loved one’s pain, you are welcome to call a crisis line for help in sorting through it.
One last thought from Jennie: People with ME endure a great deal, and many feel abandoned or isolated. If you or a friend with ME feel overwhelmed, please reach out for help. We need to look out for each other!
Thank you very much for this Jennie!
Would you consider adding a tab for this post at the top of the page? (To keep it easily accessible for people.)
Johanna – thank you very very much for this post and for all that you do!
Appreciate this, especially understanding of ME. I will save this.
Thanks for the information.
One of the many frustrating side effects of this stupid disease is that there is so little energy to help other people when you’re barely making it day to day yourself.
I have to talk myself out of the pit almost every day. I’m determined to do it – it doesn’t make anything better NOT to, but if I even allow myself to think about the lives of ‘able’ or ‘normal’ or healthy people, even my own family, it is much harder to live through what has to be lived through.
I can’t imagine how the many people who are much sicker than I manage. And my life is so isolated and tiny. I keep thinking how many things I might be able to do if they ever solve this.
Meanwhile, I try to write every day – unless some other crisis steals the bit of good energy that comes along. When I can’t write, I’m even more miserable.
Alicia, I would really like to encourage you to reach out for some help in avoiding that pit. Not because you aren’t already doing an amazing job on your own. Only because you shouldn’t *have* to do it on your own. You absolutely deserve some help so that you can save your precious energy for your writing.
One thing I neglected to mention is that nobody should ever feel like they’re “not bad enough” or “taking time away from someone who needs it more” when considering whether to contact a crisis line. If you are bad enough that you’re considering it, you are the person we WANT to contact us. I can’t speak for the way other hotlines work, but Crisis Text Line has a pretty amazing algorithm that does triage on incoming texters and prioritizes the ones most in need of immediate help, with impressive accuracy. So you might end up waiting longer than that person you think needs help more than you, but you are every bit as important and as worthy of help as that person. And even if the hotline you contact doesn’t have that algorithm, I can promise you from my own experience that there are much, MUCH lower priority people than you who still get exactly the same kind of help and support.
So if it’s a day when the prospect of pulling yourself out of that pit seems too exhausting to face, please know there are people out there who very much want to help you do that.
most important article. Thnx Jennie
Thank you, Jennie and Johanna, for addressing the issue of suicide directly and so helpfully.
“And if you are unsure what to do or feeling overwhelmed by your loved one’s pain, you are welcome to call a crisis line for help in sorting through it.”
That’s a *very* important statement. Folks who are supporting someone in pain can also become overwhelmed, and in very real pain themselves. It’s good to know there are places they can go for help.
Thank you so much for this extraordinary post, Jennie, and all this incredibly helpful information. It is so important to have an honest discussion about the pit of despair and suicidal feelings. So appreciate your sensitivity and courage.
It’s a good post which deals with issues many people with chronic illnesses face.
And then, on top of dealing with our illness and its symptoms, if something goes wrong in whatever other life we have, it’s like the end of the world.
Because we don’t have a lot of options. We can’t go off to work to distract ourselves. We can’t travel. We can’t go to movies, museums, concerts, plays, even to another part of our cities.
We’re isolated and have few distractions. I am so glad that I love to read, watch TV and read blogs about books. Those are diverting.
Thank you for this post. It’s so important. I am struggling with people understanding how serious this is. They minimize it to just being tired or that maybe I’m just taking too many medications for pain as I also have severe fibromyalgia, and 8 neuromuscular disorders. Including a spinal cord injury and I just passed my 5 year mark cancer free from breast cancer. I had to have them both removed and had a full reconstruction the same day as my mastectomy’s 3 years ago. I have pain from all of the radiation and scar tissues surrounding my chest and ribs. I do feel isolated and cast aside. Is there a support group in Toronto Ontario for ME/CFS that I can connect with? After everything I’ve been through, this is the worst of them all. I became really sick with Epstein Barr virus June 2016 and was completely bed ridden for 14 months. I changed my diet drastically to help calm inflammation and a couple of my other very painful debilitating disorders calmed down in July 2017. I am now mostly home bound and can enjoy life somewhat but the Post Exertion Malaise is horrible. A little movement and I’m bed ridden again for a few days.
Here are some links I got from a FB friend:
GTA ME-FM-MCS Support Group
ME & CFS Canada (Myalgic Encephalomyelitis & Chronic Fatigue Syndrome)
Fibromyalgia Canada
I wish all crisis lines were truly this good. I called several years ago, specifically said that I was not in any way a danger to myself, was very careful about how I said what was goign on to make sure she knew I was truly safe, & I still wound up having the cops show up & cart me off to the hospital. Fortunately, the Dr agreed that I did not belong there & sent me home, but the stress, time, energy, chemical exposures (I have asthma & MCS in addition to CFS & other illnesses) & money that said incident cost were very hard on my illnesses. Actually being forced to stay there would have been significantly worse. (I know a lot about what actually takes place in-patient, from previous experience, & I have no doubt it would have made my CFS significantly worse.) Had I truly been in danger, that would have put me over the edge.
I am extremely sorry to hear that a hotline initiated an active rescue when one wasn’t warranted. If you did not follow up with that hotline at the time about what happened and why it was not only unnecessary but damaging, I strongly suggest you do so now, if you are willing and able. I don’t care that it was several years ago; NOBODY who is both smart and brave enough to inform a crisis counselor that they are not a danger to themselves should have the authorities called on them, and this hotline really needs to know they screwed up. (It would be best if you can provide them with the date and time of the call, or as close as you can remember; if you used a name on the call, sharing that might also help them locate the incident.)
This sounds like a fundamental breakdown in mutual trust, which is the basis for a successful conversation. As a counselor, if you tell me you are not a danger to yourself, then unless you subsequently prove otherwise during the conversation by your *actions* — such as downing an overdose of pills — I trust that you are telling me the truth while you trust that I believe you. And while I am only one person which makes my experience anecdotal and not scientific, nothing like that has ever happened to me. I have trusted hundreds of callers and texters who have told me they are deeply suicidal *but* safe for the night and did nothing to break that trust. It is offensive to me that you were treated this way, and I urge you if at all possible to contact that hotline about it via their website or business number. (Just not their crisis number as counselors are not usually prepared to handle this kind of complaint.)
Thanks for your reply. I really wish that you or someone like you had been on the phone that night. I will think about reporting the hotline.
In England call Samaritans 116 123 it’s a free number
Thanks Nicola!! Very helpful info.