Dear doctors, nurses and medical students:
After ten years of being told it’s probably all in my head or that maybe I’m just a little bit sensitive, I’ve been diagnosed with:
- Ehlers-Danlos Syndrome (EDS)
- Epiploic Appendagitis
- Raynaud’s Syndrome
- Central Sensitisation Syndrome
- Ectopic heartbeats
- Peripheral Neuropathy; and
- Am currently waiting assessment for Postural Orthostatic Tachycardia.
I regularly sublux and dislocate joints due to Ehlers-Danlos Syndrome: my right hip pops hundreds of times a day as I walk. I dislocate my right shoulder taking my t-shirt off. There’s a pain in my swollen abdomen that never goes away.
Due to the EDS’ collagen defect I am prone to rashes, eczema, and skin infections. My hair breaks and falls out, despite caring for it ever so carefully. Every month I get wipe-out migraines during the luteal phase of my cycle.
I don’t eat gluten, sugar, fried foods. I eat a wide range of fruit and veg. I eat grains in moderation and not every day. I avoid eating vegetables from the nightshade family. I don’t drink soft-drink. I don’t drink. I don’t smoke. I lift weights every second day at the gym. I do hydrotherapy every second day. I do daily physio exercises. My middle-aged metabolism is wrecked from years of teenaged yo-yo dieting.
I don’t receive welfare payments. I’m not assessed as eligible for the NDIS at this time.
I have both chronic and acute pain. The chronic pain is constant. The acute pain comes and goes.
I can accept there may be no cure: but I can’t accept there’s no treatment, because frankly that’s bullshit.
To every doctor, nurse and medical professional who didn’t help me access a diagnosis and treatment: fuck you. You left me in constant pain and gaslighted me. You’re are an anathema to the Hippocratic Oath. You should be cast out of the medical profession.
You’re inducing medical trauma in patients: I now wake up at night in tears from nightmares about the way doctors and nurses treated me over the years.
I’m a person with a university education, a supportive family and some means: but to finally receive formal diagnosis I had to seek multiple opinions; wait years; cease using my local hospital and travel across the city to a different hospital; blog my symptoms and crowdsource access to a private expert; and find a new GP clinic to support me. God help the rest of the general population.
I feel so very angry at the medical profession.
No one takes responsibility for helping patients with chronic illness access treatment. I have no advocate within the medical system except myself. Every time I politely ask for treatment it becomes a miserable multi-year-long adventure in proving to some medical gate-keeper that I actually need it.
Despite a GP care plan for five physiotherapy sessions, I still have to pay $60 p/hr. Physio is something I’m going to need for the rest of my life.
And yes, there’s an offer of pain medication. But that’s not good enough. I don’t want to spend every day of the rest of my life on pain medication. I want treatment for endometriosis: I want access to a full hysterectomy. I want funding for hydrotherapy and physiotherapy that I’ll need on an ongoing basis to help me cope with Ehlers-Danlos Syndrome, CSS and Raynaud’s.
I’m in chronic pain and no one has yet told me how many months I’ll wait for the next appointment with a professional to assess whether or not I’ll be added to a waiting list to maybe get treatment for endometriosis.
You’re failing your patients. You’re hurting people with your use of gate-keeping and waiting lists.
I shouldn’t have to resort to social engineering tricks to get access to treatment and experts. I shouldn’t have to beg for help from friend’s family members who work as health professionals.
Refusing to give patients a time-frame for when they’ll ever be able to speak to an expert about treatment is unacceptable.
The current 18-month waiting list for public rheumatology consults is a failure of the Australian public healthcare. Leaving patients completely untreated for years is nothing less than a form of torture.
A waiting list is not healthcare.
A system where the only avenues patients can use to access the help they need is either exploiting privilege or begging is a health system that’s failed.
So what can you — as a caring health professional — do?
You can advocate for your patients. You can document the failures of the health system you work in. You can publish evidence of the failures of Australia’s health system to treat and support people with chronic illness. You can speak up.
You can stop assuming or pretending someone else is treating your patients. If you’ve diagnosed something a GP hasn’t, there’s a good chance a patient has been sent to you for expert treatment and advice after waiting for months or years to see you. Help them. Be the expert they need. Make sure they leave with a treatment plan.
And maybe that sounds like some pretty scary things to be asked to do. Yes, I’m asking you to put yourself on the line for other people. For your patients.
Maybe you’ve insulated yourself from what poor healthcare for chronic illness does to people’s quality of life. Maybe you don’t want to know. Don’t want to know how people rot slowly and die of agonizing infections.
If you’re not a sociopath, if you’re better than some nasty self-interested piece-of-work who doesn’t care if people get left in pain, then you have a moral obligation to speak up for your patients.
I don’t want to spend the rest of my life living in pain and I know there are thousands of other chronic pain patients like me whose conditions would be vastly improved with adequate, timely treatment. Help us. Stop hurting your patients.