Doctors had always said that fibromyalgia isn’t going to kill us.
They mean it’s not a terminal illness. Our muscles won’t degenerate, and we won’t (completely) go bonkers from our impacting cognitive impairments aka fibro fog.
What they completely ignore is the fact that we are at increased risk of dying by suicide or accident.
Researchers attribute this to the severity of our condition.
Nevermind that most people (not all, but I would defiantly argue most) underestimate the suffering that fibromyalgia inflicts.
People who live with chronic illnesses are more vulnerable to suffering from depression anyway, so it shouldn’t be surprising.
But I think somehow, people end up discounting fibromyalgia on account of it not being a proper ‘disease’ but instead a ‘disorder’ or ‘syndrome’ or whatever it is the so called professionals are calling it nowadays.
Judgers & juries
To be frank, I don’t give two pence what they call it. Its effects are devastating enough to move sufferers to suicide.
Not everyone will understand this. And I’ve had my fair share of caustic criticism from people who feel I am ungrateful and selfish for suffering from clinical depression enough to want to an end to my life.
I don’t expect anyone to understand.
But whether or not people understand, the harsh reality is that fibromyalgia patients are suffering. Try living day in, day out with pain, crippling exhaustion, migraines, insomnia, depression, and cognitive impairments among other symptoms that also make us prone to dying by accident.
And I can hear that NY doctor’s voice in my head, telling me to be grateful I’m not dying of cancer.
It’s easy to judge isn’t it?
It might seem we can still live a normal life but fibromyalgia is a debilitating disability, not just physical but mental and emotional. Sure we’re not dying, but we’re not getting any better, trapped in this cloudy haze as we struggle to hold on to… hope? Hope of a cure? Or that we’d wake up one day and feel better? I’m not sure.
Walk in our skin
Have you considered why we might be at increased risk of dying by accident? Could it be that with our cognitive impairments we’ve done one of our mental mix ups putting us or our family in harm’s way? I knew of one sufferer who unknowingly put her cat in the washing machine. It’s difficult battling pain with these kind of impairments, and still trying to live in the ‘now’ so we can have some semblance of life too.
As one supporter of my blog said rightly, fm affects our bodies and lives in every possible way… it’s like being a prisoner in your own body, she said.
We’re trying to make the best of what we have but it is not easy, fibromyalgia sufferers know. Not especially when we are being compared to other people ‘suffering more’ than us. What’s the point of comparing anyway?
Every person has their own limit of what they can bear. Don’t judge unless you can take our suffering.
I’m not advocating suicide but as someone who has suffered immensely and continues to struggle with this, I’ve felt the bitter sting of condemnation from family, friends and doctors alike. And I know that doesn’t help. How could it?
One of the most moving books I’ve ever read has provided a thought by which I try to live my life. In Harper Lee’s To Kill a Mockingbird, the character Atticus Finch says to his daughter, ‘You never really understand a person until you consider things from his point of view… Until you climb inside of his skin and walk around in it.”
If people would stop spending so much time judging, condemning and criticising and instead try to understand what moves a person to suicide, and how they could be supported, certainly that would do more good.
For all my fm sufferers, in the meantime, just keep on going. Don’t ask yourself why, don’t think about it too much. Just keep on going.
With love and gentle hugs.
Hey Alisha, so sorry this is taking the life out of you, but I am happy you’re brave enough to talk about it publicly. Good advice you gave to the end. Thanks for sharing. My prayers are with you.
Thanks always for your support, love and encouragement Charlene. You’re an amazing friend who never judges and I pray that all fm sufferers are lucky enough to have at least one friend like you. Love you!! xx
It’s the mental part that gets me. Sometimes I can’t think straight at all and I feel like an idiot. My poor husband has to just stand there looking at me while I struggle to even find the words to say something. He’s great with understanding about the physical part of fibro, but the mental fog I experience frustrates him, I know.
Ohh I get you completely. Sometimes I really do feel very stupid when I can’t express myself well or I don’t get what someone else is saying to me when I know I should.
wha an great piece of writing … i do suffer from clinical depression alongside my fm … and battle both on a daily basis- and your blog just sums it up – no one can really understand what we deal with and it is only to easy to slip into that depressive- and yes sometimes suicidal – spiral when you are being judged by others.
Hazel – thank you so much for your encouraging feedback. Often when I am very low it such feedback that encourages me to write inspite of how I feel. It has made all the difference to my battle in knowing that there are others out there who understand exactly what I’m going through. I really hope you continue to stay on top of your fight. Remember you’re not alone:) hugs xx
I have suffered from Fibromyalgia for years and I still sometimes feel so terrible when I go through a bad flare up…day to day living becomes so difficult and frustrating…However, I suffered from a cardiac arrest in April and whilst in hospital I was taken off some of my pain meds including Amytriptaline which unknown to me was contributing towards the heart problem I was unaware of Dilated Cardiomyopathy. Apparently one of the side effects of the medication were arrythmias which for someone with my condition is potential dangerous and could be fatal. I was lucky I survived only because someone was at hand to perform CPR on me to try and get my heart started before the emergency services arrived and they used the defibrillator twice to get my heart started again…My condition was critical I was flown to John Radcliffe in Oxford and spent two weeks in hospital.where I was diagnosed with my heart condition and had to have an ICD fitted as I would be prone to Sudden death attacks….so can Fibromyalgia kill a person….well suicidal feelings and side effects of prescribed medications can lead to death. I thought I would share this one with you all….just to let make you aware that certain medications can lead to death…My GP was unaware of my heart condition….but I had told her on several occasions that I was experiencing a lot of arrythmias…but they put it down to anxiety attacks!!!!!!!! No further investigations were made!!!! So please be aware of what some meds can do….I am now a different medication…but I am still wary…and maybe a little tad paranoid now of what prescribed medication can do to a persons body.
WOW Bev!!this is so scary!!! but first let me say I’m really happy and thankful that you’re still here with us. That was very careless of your GP to simply put your arrhythmias down to anxiety attacks and not investigate to be sure. WOW, I still can’t get over this.
Before I started Amitriptyline the doctor did make me aware of the possible side effects and on a separate occasion my then GP reminded me of this because I was also on another antidepressant which increased the risk of a heart attack. Thankfully I’m no longer on it because I’d be super paranoid now. I always check the side effects of new meds I’m starting but this experience has certainly reinforced the need to look after one’s own health and not rely entirely on one’s GP. Thank you for sharing with us Bev, really appreciate it. Gentle hugs xx
Hi
I tried to explain fibro to work colleagues in an e-mail so they would understand why I no longer work in the office and can only do a few hours a day, I put in it that suicide is the biggest risk of death in Fibro. The couple of people I sent it to have not spoken to me since!!
I had a very bad suicidal period in April/May of this year due to fibro, relationship problems and the death of my Nan who I’m very close too. I am lucky to have a very good and understanding doctor who got me help straight away and I started seeing the Community Psychiatric Nurse. I’ve now finished my meetings with her and am stronger, I also know I can ring and get an appointment at any time if things get worse again. Please anyone else suffering don’t be afraid to tell your doctor and get the help you need! It took me 2 doctors visits and on the second one I just handed my doctor a sheet of paper I had written about how I was feeling, I didn’t have to say anything or find words. So if you can’t face talking about it, write it down and give that to your doctor, it works!
With regard to being at risk of dying from accidents caused by the fibro fog, I pasted a link to this blog post on my facebook page and a friend found has told me that due to the fibro fog one time recently she reached for her bottle of water in the bathroom and started to drink, only to find she had picked up the wrong bottle and was taking a mouthful of bleach! Luckily she didn’t swallow the mouthful and sustained no lasting damage! She wanted people to know how the fog can affect us like this but without putting her name so she didn’t worry her family!
I too have done stupid things, usually when the fatigue has been terrible, cutting my hand badly on a tin getting tuna out for the cat with my fingers when the lid was still partly attached to the tin. I tend to find I’m worst if I don’t get the sleep I need (usually about 16-18 hours out of 24!). I am lucky that I don’t have kids so can sleep as I need, not all fibro sufferers are able to get the rest they need.
Claire, thanks for being brave enough to share your struggles with us too. I’m really sorry that your colleagues have not spoken to you since yo ur email to them about fibromyalgia and the risk of suicide. I think it really is tragic just how much people judge us and all those who suffer in this way.
I am happy though that you were able to get the help you need and are on the mend. I think having at least one friend who understands, doesn’t judge and who you can talk to about this frankly really does help a great deal. Please know that you have a listening ear here and you can email privately as well to the email address on my about page (can’t remember it now:S) Support is so crucial and sadly many sufferers don’t get the support they need at home or on the job.
That story about your friend almost mistakenly drinking the bleach is really frightening and it shows just how much at risk we are for accidents. I’ve almost gotten knocked over many times while crossing the street. And you are right, it does tend to be much worse if we haven’t had rest (me at least 9-10 hours though I never get sleep for much of these. I’ve also cut myself bad twice in the last two months! Please be careful and as alert as possible – you and all our friends with fibromyalgia here.
Much love and Hugs:) xx
Hello we are learning so much. Accept our thanks for this informative blog. We with this painful disease have such a difficult time.
Thank you so very much. Maz and co.
Thanks for your encouraging comment Maz. I am happy you are finding it useful. Fibromyalgia is indeed a very difficult condition to live with and we can only try our best, hugs.
Hi there i to have fm and various other illnessess and suffer really bad .i found ur blog and i have read some good information and learnt alot that i didnt know so thank you very much
Hi Shona, I’m sorry that you have it tough. You’re very welcomed! I’m glad that you found some useful information here. Feel free to drop by anytime with questions or for a chat. All the best:)
Thank you.You nailed it.Nobody knows,unless they are in your body.I keep going,Its hard.It’s a very misunderstood condition,like you say.I feel that doctors try to treat.But,they do not feel your pain.It tremendously effects your life.Thanks for your support. I do know what you feel like.
Thanks Lana. People make a lot of assumptions but it’s only he/she who knows it feels it. Glad to support you. Stay in touch and let me know how you’re doing! 🙂 x
If my spirituality with God wasn’t so great? I would see no reason at all for not taking the remainder of my pain meds that I weaned myself off of 7 months ago. At least 100 oxy and hydrocodone tablets. All at once. This pain is un-F’ing real. Suicide is NOT the unforgivable sin that most so-called professing Christians claim is. Blasphemy against the Holy Spirit IS. Another day of pure hell and the hope of a better day is seemingly quite distant. I always tell myself that it will get better. Just when comes my usual thought response.
I’m so sorry to hear you’re in this very dark place my friend. I can definitely relate and just want to remind you that you’re never alone in your suffering or how you feel. If we could just hold on for another day, and another…we never know what the future will bring. The great thing I try to remind myself is that our God can see our ends from our beginnings. Even when it’s hard to carry on, we have to remember that we’re only seeing a small piece of our story. And our story isn’t over until He says it is. Be strong and of good courage. Here to chat if you need a shoulder too 🙂 x
I have been suffering from a very aggressive form of this disease for 14 years now. I am honestly not being critical of your article – it was very well written and I understand where you are coming from, but I must add a some things that few know. The meds – will shorten our lives because they affect our organs – they are poisons. 22 people died last year from fm. It can start to attack your organs – mine has started attacking my intestines and heart. It compromises our immune systems. Affects our balance – making falls much more common. A side affect of not being as mobile and depression for me has been weight gain – which we all know isn’t good for our health. Yes the depression is a major problem – it feels like we are just shades of who we used to be. We can’t make plans because we never know how we’re going to feel. The only things I have found that help at least minimally are a healthy diet (no artificial sweeteners, no caffeine, and cutting down on refined sugars) and honestly cannabis. It helps with the depression, pain, and malaise. I wish you all the very best and pray that a cure will be found.
Hi Flutter, thanks so much for sharing so openly. I understand what you’re saying and agree. It is true about the meds – I had to beg my GP to take my off Pregabalin but by then I’d gained over 45 lbs and was overweight. I know it’s not easy but it’s not insurmountable. With alot of hard work and pain I’ve managed to lose some of it and I tell people I choose to take meds because I’d rather have some quality of life and a short one than a long one with no quality.If I didn’t take drastic measures I would have still been dependent on a walking stick, might have had to go ahead with surgery on my feet and I know my health would have declined further. I still struggle greatly and often feel unsure of my future. But I believe if we have no hope then there is no chance. I never thought I’d get some any semblance of life, and it is still hard but things are far better than I ever could have imagined they would have been back in 2011 when my health was at its worst. I hope that you will continue to find relief and I am here if you ever want to chat or need a friend. All the best my friend. I recently took swimming classes and found it very beneficial, less pressure on the muscles and relaxing- something to consider.