*TW - talk of suicide and suicidal ideation
September is both pain and suicide prevention awareness month. I was originally going to write a post about living with chronic pain but I want to open up more about my lived experience of mental illness as well as physical illness.
I’ve lived with chronic pain for many years now. I experience many different types of pain so I take different medications for different types of pain. I always refer to my medication as ‘pain relief’ rather than them being ‘pain killers’ as they don’t eliminate my pain they just make my pain bare able so I can just about function and have some quality of life.
There are days when I do struggle to function because of my pain. At the moment I’m going through a difficult time with my bladder. Due to my Ehlers-Danlos Syndrome it’s caused problems with various organs including my bladder and I’ve gone into bladder failure as a result. I also have a neurogenic bladder which a problem with the functioning of the nerves in my bladder. I experience severe, and I mean severe pain in my bladder. I’m trying to get Botox treatment for my bladder but because I’m not a straight-forward patient and I require additional care. Having a rare illness like EDS throws curveballs into my care and makes me more “complex”. At my local hospital I am a zebra in a hospital full of horses and my hospital isn’t equipped to properly care for zebras. This means that patients like myself struggle to get the care they need.
Sometimes the pain sends me into despair. I’m maxed out on meds, I’ve got my heat pad on me, I’m doing breathing exercises, I’m trying movement (if I’m able to move), I’m trying to distract myself yet nothing is helping. There are times I contemplate calling 999 but then I think ‘what more can they do?’ I don’t want to be taken into the Emergency Department either as what can they do too?
I hate taking a cocktail of medication. Different drugs for different types of pain and then there’s extra pain relief meds as breakthrough pain relief for when the pain gets bad. I hate taking so much medication but I equally don’t want to be in pain. Medication allows me to get through the day without my whole body yelling at me that it’s feeling a multitude types of pain and that my body is out of action. Medication is just one of those unfortunate things that I have to take to get through the day.
I often find my pain isn’t believed. Because I handle pain so well because I’m not curled up screaming and crying medical professionals don’t believe I’m in the amount of pain I say I’m in. This leads me to not getting the care and treatment I need and deserve as someone who is chronically in pain or is experiencing acute pain.
I often feel that my pre-existing illnesses are also passed off as the reason why I’m in pain without investigating for other reasons why I’m in suddenly in acute pain. Pain is the body’s way of saying that something is wrong.
I definitely feel I’ve experienced the gender pain gap when it comes to my health and medication and doctors attitudes.
My local emergency department dropped the 1-10 pain score replacing it with a 1-3 pain score scale. Based on the new 1-3 pain scale I live at number 3 on a daily basis. When I’ve reported a number 3 to the nurse I’ve often not been believed based on how I’m presenting. I can be in acute pain but I’ve learnt to handle pain. In hospital in my ‘go bag’ I pack a power pack, a charging cable and headphones alongside bringing my phone so that I can listen to audiobooks to help distract me while in the Emergency Department from symptoms, my pain and nausea and my medical PTSD as well as to help pass the time while I lay and wait for tests, scans, treatment nurses and doctors.
Living in chronic pain especially at the moment with my acute bladder pain especially when it flares up and because intolerable takes a huge toll on my metal health. On top of that I have my EDS pain in my joints and other parts of my body like how it affects other organs alongside my bladder and when joints decide to dislocate after doing something so mundane. Then I have my M.E pain which is in every part of my body. My muscles, nerves, bones, joints - name a type of pain and I feel it. This really wears me down. I get ‘sick and tired of being sick and tired’. Sometimes I wish there was a way for my pain to disappear, especially when I’m in an acute pain episode.
So good pain management is good suicide prevention. There have been people with M.E like Lynn Gilderdale who ended her life because she couldn’t take the suffering of her severe M.E anymore. Better services need to be provided to help chronically ill people deal with their pain. In the UK the NHS is a postcode lottery. Locally for me our “pain management service” is shockingly bad. They just parrot out of an awful resource called The Pain Management Toolkit. It’s a one size fits all service; not tailored to individual’s needs. Even trying to get pain management for my urologist wasn’t great. At my last appointment I wasn’t given the opportunity to explain my pain and how it was affecting me. From experience there isn’t even time with doctors to truly get down to things like pain management. The only way I can see patient can really get management from their pain is when their condition becomes palliative and the hospice can support and trial pain management options. That’s how it feels locally anyway.
There’s little communication between mental health and physical health services too. You can become suicidal due to pain but you aren’t mentally ill so you get no support from mental health services other than a letter to your GP. GP’s aren’t experts in pain management or mental health. You get a prescription and you're sent on your way, but medication is just duct tape on a dam that is ready to burst. The route of the problem needs to be addressed and fixed but again that comes back to the NHS postcode lottery and whether the support and treatment exists for you.
I feel my horses hospital is reluctant to refer me to a hospital that can deal with zebras for the bladder surgery that I need along with the complexities that come with me having surgery because I’m a zebra because that costs more money than treating me in the horses hospital.
I am so grateful that I live in the UK with the the NHS but the system is far from perfect. Yes I probably wouldn’t be where I am without the NHS but if I were in America I could find a hospital and an urology department that can treat zebras like me. I can also find M.E services that exist and get the care I need for my EDS’ ever growing problems. I can find doctors I relate to and feel comfortable with and confident in knowing that I’m being well cared for. I’d love to go private in the UK but I just can’t afford it and I’m not a person to crowd fund.
My pain, my symptoms, my complexities, my frustrations and not getting the care I need come at the detriment of my mental health. It’s plain and simple good pain management saves lives.
Statistics
- A major UK study found that 9% of 11-15 year olds experience both chronic pain and suicidal ideation.
- Almost three quarters of of young people who experience and overlap of pain and suicidal ideation were girls.
- 18-50% of patients living with chronic pain experience suicidal ideation at some point.
References: University of Oxford and the National Institute for Health
The gender pain gap
- Over 50% of women in the UK feel their pain is dismissed, ignored or labelled as emotional by healthcare professionals.
- Up to 81% of 18-24 year old women feel their pain isn’t taken seriously.
- Data has shown that only 47%of women receive a diagnosis for their pain within 11 months compared to 66% of men.
