Something that came into my life with falling ill with ME, is farewell. I’ve lost 10 close and mutual ME friends, since being connected with other ME patients. Besides heart disease and cancer, suicide too is amongst the most likely causes of death for ME sufferers.
When I read the list for suicide risk factors, it dawns on me, that the bad medical care situation for ME sufferers worldwide, the stigma and ostracism through our surroundings or medical personal will increase those.
I know, even hope can get numb over time. And the more this hope resembles the last straw, which you desperately hold on to, with all the strength you’ve got left, the steeper is the fall, when it disintegrates.
It is hard to generate hope, when you know how little money goes to ME research and how much money has been wasted, because ME hasn’t been thoroughly seperated from other fatiguing illnesses or like it happened with the PACE Trial, where data had to be later violently manipulated to fit the diehard hypothesis.
Sorry, I got a bit lost.
Anyways, this is the list of factors, which can make a suicide more likely.
1. acute crises
2. existential crises
3. philosophical upvaluation of suicide
4. chronically stressful situations, such as ‘mobbing’
7. insufficient social network
8. relationship problems
9. feeling of threat, lack of security
12. severe physical illness
13. chronic pain
14. severe feelings of guilt
15. being out of work ( feelings of worthlessness, feeling even socially redundant, lacking purpose)
16. financial strain
17. not being believed
I found this list extremely hard to read, because nearly every ME sufferer is easily able to tick five or more boxes. Therefore it is so so important, that those factors, that have nothing to do with the patient himself, but are being put onto him by external sources, won’t be such a heavy load anymore as soon as possible
Examples for those would be fighting for pensions, disability status und how your surroundings treat you, family, friends and medical personal.
This year, by the mid february, I’ve had to say farewell to two ME patients I knew already, who commited suicide. The second one isn’t mourned yet, because I really got to love her.
She is the reason, why this blog entry is called ‘Chicago’. She loved the song ‘Chicago’ by the german artist Clueso very much and I cried and prayed while listening to it and then tried to sing it myself. Grieving and singing don’t go particularly well together, because grief tends to choke you.
Many tears later, the emotinal choke hold isn’t that strong anymore and I can spot her in and between the lines, though the song is about a woman whose illness is an addicition to i.v. drugs. But it expresses also a strong longing for life.
My online friend was a glowworm, a firecracker, a ‘Lachsack’ (canned laughter device in a cloth bag), a crazy chick, a goldfish, freespirit with a warm heart, smart, stubborn, creative, wild, full of longing,…
… and ME, which manifested, when she was preparing to go on a trip around the world, restrained her in every aspect of her being.
The last travel vaccination turned out to be her trigger and she became severely ill very fast and spent her last year in isolation and darkness, unable to stay in contact. Before it got this bad, she comforted people or made them laugh, even with her little energy. She often gave some of her spoons to her mates (part of song lyrics), which will make sense to anyone familiar with ‘Spoon Theory’ by Christine Miserandino.
Most of my fellow ME people learn to let their small world be huge and to cherish the moment and enjoy it. But this isn’t easy. Not everyone is successful and I believe, everyone, which includes the healthy population, has a breaking point. Though hopefully many won’t experience it.
For those, chosing to die, several things can be relevant. Sometimes it is a rational decision, sometimes an impulsive act to stop the severe symptoms one isn’t able to stand anylonger.
I tend to think, the ones I got to know in all their livelyhood, they just ran out of energy. This is understandable and at the same time so hard to accept and to mourn.
I’m going to cry some more and practise to sing ‘Chicago’.
And you, goldfish, rest in peace or swim, dance, fly, whatever makes you happy and what I so wish you could have found here on earth. ❤
Translation Chicago (by Clueso):
She’s always, where the hive of activity is, always downtown,
where the small world is huge she feeds on the lights until she is full.
Once in a while she talks about this or that person.
She’s been with everyone.
Even when she doesn’t take that good care of herself,
she cares for being in contact.
And she’s dreaming of Chicago, of Chicago.
Anywhere, where nobody knows her.
And she’s dreaming of Chicago, of Chicago,
where nobody, nobody calls her by name.
With her sunny dream in mind, she is walks through the rain,
telling anyone she come’s across, she’s been there.
She describes where exactly she’s already been,
she is familiar with this and that.
And if you’ve brought a little something, she takes you there for one night.
She takes you to Chicago, to Chicago,
anywhere, where nobody knows you.
She takes you to Chicago, to Chicago,
where nobody, nobody calls you by name.
But when someone tells her that she is living a dream, she instantly goes beserk.
Even when she sleeps for a short time, when the light comes on, she has got to go back.
Sometimes she meets up with a few people at an uncertain place.
And if there’s fresh stuff running through the veins, one gives a spoon to one’s mates.
And this time, she hasn’t come, maybe, she hasn’t made it.
A small note is everything she left:
I won’t come back anymore, I’m in Chicago, in Chicago.
Anywhere, where nobody knows me.
I won’t come back anymore. I’m in Chicago, in Chicago,
where nobody, nobody calles me by name.
Resources for those feeling depressed or suicidal:
National Suicide Prevention Lifeline
Or text HELLO to 741-741 for free (24-hour support from the Crisis Text Line)
Please follow the link to access phone numbers of support services
The International Association of Suicide Prevention (IASP) has further ressources listed for additional countries. Many are lifelines, even with the link saying “crisis centres”.
McManimen, Stephanie L.; Devendorf, Andrew R.; Brown, Abigail A.; Moore, Billie C.; Moore, James H.; Jason, Leonard A. (2016), Mortality in patients with myalgic encephalomyelitis and chronic fatigue syndrome
Jimenez-Ortiz, Juan (2016), Risk of suicide due to neglect amongst people living with myalgic encephalomyelitis/chronic fatigue syndrome in spain
Kapur, Nav; Webb, Roger (2016), Suicide risk in people with chronic fatigue syndrome