Being the EDS patient

If someone were to ask me about the hardest part of living with EDS, I can answer the question without even thinking. It isn’t, as you may expect, living with joints that pop in an out multiple times a day. It isn’t the fatigue, the constant and unending fight you need just to get through the day. It isn’t even living with chronic pain. Hands down I can truly say that the absolute worst thing about living with EDS is the sheer level of neglect you experience from 99% of the doctors you see.

It is exhausting beyond belief to continually need to advocate just to get basic care, referrals and medication. I thought that things felt bad enough before being diagnosed with Chiari and AAI, but really that was easy in comparison to getting the right help now.

This week I discovered that the 4 referrals my GP was meant to do have not been done. This in itself would be far less frustrating if she were honest and upfront about not doing them, but instead I have spent the last few months trying to find out when the referrals would arrive. Each appointment she looked me straight in the eye and told me they had been done. Finally a couple of days back, I asked my carer to find out from the reception staff where the referrals were up to. It turns out she hasn’t made any of them.

I could understand it if it were for less serious issues – maybe I could get my head around it if it were to a dietician or physio even. Yet one of these was for an MRI of my spine after my leg went numb for 6 weeks (and still has altered sensation and weakness over 2 months on). Another was to see a neurologist after my dizziness and issues with, balance and weakness have gotten worse. Both of these were referrals she told me I needed herself as she isn’t comfortable treating the symptoms without the referrals being made.

Another was for breast screening which I should now be having on a yearly basis. This should have been made way back in September, and it really is the one referral I can fathom a refusal too. Surely if they know the risk of cancer is high, and I have tested positive for the gene mutation, there is absolutely no reason for it to be refused.

I am so frustrated with it all. I really did think that with so many serious issues beginning to happen, that maybe the care would be slightly more forthcoming, but instead it is worse than ever. I spend my appointments being talked down to and treated like some sort of hypochondriac or gullible young girl. The entire thing feels like some sort of sexist power play. It is patronising, dehumanising and quite frankly it is simply wrong. I can’t help feeling that if I was male, 5 years older and had a beard, I would be treated very differently indeed. Maybe then doctors would do what they promise, talk to me directly and be straight up and honest about their opinions.

So what effects does this have on a person? Sadly the effects go far beyond what you may first imagine.

Having had years of my symptoms being ignored or belittled, I have for the most part, given up on seeking medical care. I only go to the GP when something major happens, and not once did it cross my mind to ‘bother’ the doctors in an emergency room after the feeling in my leg disappeared. I didn’t see my GP for 3 days until I was absolutely sure that it wasn’t just something that had just popped out of place or something that would sort out on its own. I refused to go because I was scared. I was petrified of being laughed out of the waiting room, or that someone would try and suggest that it’s all psychosomatic, because most of the time they are exactly the reactions that we get. This continual drip feeding of negativity is unbelievably damaging, and if you don’t struggle with confidence, depression and anxiety before hand, you certainly will by the end of it.

You are left constantly second guessing yourself. I must analyse myself better then any doctor ever could every time I consider asking for help. I spend so much time hearing that my symptoms cant be real, that I have a genuine fear that maybe they are right. Maybe I’m just too lazy to walk without walking aids, maybe I secretly just don’t want to get better. Perhaps my brain trying to escape my head is simply some sick fantasy I’ve dreamt up out of a need for attention. Even though I have symptoms, test results and scans coming out of my ears, I now question myself every single time I need to ask for help.

EDS already leaves you unable to have the life you should be having, but on top of that comes the alienation that seeps out into your personal life as a direct result of lacking supportive medical care. The more I struggled to get treatment or help, the more family failed to believe me when I said that something was wrong. Everyone trusts a doctor will be right, so what hope do you have of convincing those around you that you are genuinely ill when your doctor prefers to chalk everything up to feeling a bit down? I spent years having to fight for care by myself due to incorrect beliefs that it was all ‘in my head’, and this was painfully lonely. I would give anything to be able to be genuine and honest about how I am feeling, but I have now learned it is much safer to keep my medical issues to myself rather then risk dismissal from those that should be some of my biggest support.

With the Chiari and AAI, the effects are amplified exponentially. Your symptoms are rare,  unexpected and odd. They are not what a typical doctor comes across. Not only that, but in the UK no one has an interest in fitting the puzzle together for EDS patients. Instead you are left to flounder alone. There is no expert to ask, there is no guarantee that anyone you see will treat you fairly or with dignity.

The panic I now get before appointments is not unlike the panic I experience from PTSD, because I know that if I see the wrong doctor, or see the right doctor but on a bad day, I could potentially land myself with a diagnosis of mental illness rather then any help for the symptoms I so desperately need relief for. I can not explain to you just how exhausting, tiring and frustrating it is to know that there is treatment out there that’s successful in not only halting the progression of symptoms, but very often in reversing a lot of them. It is out there, but unless you are lucky enough to be born in the right country, you need to somehow find an unbelievable amount of cash in order to access it. Not only that, but this country is full of doctors who refuse to even accept that these problems a) really exist for EDS patients (claiming that the term hyper-mobility instead of instability should be used in EDS patients purely because we obviously have superpowers that mean damaging our spinal cord or brainstem isn’t in any way dangerous!). or b) take note of numerous case studies and scientific data coming out from specialist neurosurgeons abroad who have been doing these operations with great success for many years.

It is all so unethical and unjust. It is wrong. I am a capable woman who lives with chronic illness. I am not attention seeking, and I am not making everything up for fun. I am simply asking to be treated like any other patient – with fairness, dignity and respect.


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