I have been in pain since I was 9 years old. You can even see on my childhood videos when it set in. Like, it was honestly a shock to see myself on video running around and jumping just like all my friends. I literally don’t remember that at all.
It took me another 12 years to get my first diagnosis (Ehlers-Danlos Syndrome), and then another 6 years of anywhere near adequate pain relief. And by adequate, I mean: ‘takes the edge off the edge just enough that I can just about function’.
In that time I’d been given pills that did nothing for me, pills that traumatised me, pills that made me psychotic and gave me PTSD. I’ve been to physios who pushed me to do things that harmed me, pain management therapists that made me so depressed (“you need to expect less of yourself”) that I ended up taking those pills that traumatised me, and doctor after doctor who dismissed my experiences and individuality because of my age and how I looked.
I recently saw my GP, and he said something that really upset me.
I’m very lucky. I really like and trust and respect this man. My mum thinks it’s because I can go to him and tell him what I want and he usually does it, but that’s mostly down to the fact he actually takes the time to listen to me. Shocker.
I was having a particularly bad couple of weeks. New symptoms had popped up, my health was in the toilet, and I was severely depressed. We spent a while talking about stuff, including setting up some referrals for the new things, and I said to him that it was times like this that made me wish I could just go to hospital, even for a few days.
And he told me that even I knew that’s a waste of time, because there’s nothing anyone can do for me. Everything has to come from me. Which essentially equates to pushing through those feelings and sucking it up.
I’ve been thinking about this a lot recently, because the nature of long-term chronic conditions that have little research behind them, and an underfunded, overstretched NHS, means that the vast majority of people I know who are in the same boat as me, live in this weird limbo.
It’s very easy to exhaust the medical options when there’s next to nothing available. Medication, 10 sessions of CBT, and 10 sessions of physio. Great. That lasts me ten weeks. What about the rest of my life? Unlike acute conditions, my body changes every hour, so teaching me a few strengthening exercises and then setting me free does absolutely nothing to help in the long-run.
It’s this feeling of abandonment which led me down the road of alternative wellness. Out of desperation and frustration that I had to figure out how to exist in my twenties with no support from the medical establishment. Luckily, I’ve outgrown that too, and it has taken a lot of time for me to realise that in order to even try and function at more than a ‘I can get out of bed’ level, there are a few things I need every week:
- Mental health therapy (because being this sick in your twenties is bloody hard to navigate)
- Physical therapy of some sort (I’m starting up hydrotherapy…I only get 10 sessions but then hoping to transfer this to a local hydro pool with my boyfriend. I’m also seeing a personal trainer to help me gently and safely build strength at home).
- Some form of soft tissue massage and trigger point manipulation from someone who knows what they’re doing.
All of which costs money. Money, which I don’t have because I can only work part-time. And I’m luckier than most because I can get access to this stuff with assistance when I really need it.
I remember reading an interview with one of the main EDS doctors where he said that EDS doesn’t have to be anywhere near as disabling as it is for so many people…if they got appropriate care from an early age.
It’s wildly upsetting to think about how many people out there are more unwell than they ever needed to be because we didn’t have access to the care that could have mitigated some of the worst times. It’s frustrating to feel like every step forward only comes from me pushing and fighting and standing my ground. Or spending money I really don’t have to spare just to feel a bit supported.
Unfortunately, I don’t know the answer. Throwing money at a problem doesn’t solve everything, but for many of us, just feeling like we consistently have someone on our side to help guide us through complicated and confusing bodies would be a great place to start.