When you’re chronically ill the vast majority of people would do anything to get well. That was me several years ago even before my health deteriorated to the point at where I am now. I’d been ill for several years and I was desperate to feel even the tiniest bit better; to get some relief from my symptoms and to maybe, just maybe get to a point where I became well enough that I could get my old life back, even if it was just a little bit of my old life back and I was will to do or try anything to get this.
I spent so so so much money trying to get well. More money than I dare think I spent and in the end it was all for nothing and I didn’t get my magic cure. I tried so so hard and I kept going for so long before I realised that I had to stop trying and that what I was doing wasn’t working.
It started out with my stepmum getting talking to a stranger in the free-from aisle in the supermarket. My stepmum and this stranger got talking about her health problems and my health problems and this stranger recommended this private integrative medicine centre and this specialist doctor at the centre that she went to and gave really positive recommendations so she gave the details of the clinic to pass onto me. From there I made an appointment with this doctor. I thought it was worth a try especially as I wasn’t getting much care from the NHS. I’d received my M.E. diagnosis but after this no further care was given to me; I’d felt like I’d been left to deal with my M.E. on my own. At this time and the time of my diagnosis my M.E. was moderate. So yes I was struggling with my M.E. especially and I wanted to see this private integrative doctor to approach my care holistically as I’m more of a fan of this approach to care than the medical model; I also wanted to see what she could offer me and hopefully give me some relief from my symptoms.
I paid for regular appointments with the doctor to talk about my symptoms and she told me about things within integrative and homeopathic medicine that could help with my different symptoms. I paid for medicines that she prescribed such as homeopathic remedies - I’d try one and it wouldn’t help so the dose would increase still no help so then I’d try something else. I was also prescribed herbal remedies such as tea to help with my digestion and another for colds and flu. One herbal remedy did help that was for my chest. I was also prescribed multiple supplements such as an echinacea tincture for my immune system - I still take echinacea I do find I helps my immune system. All these homeopathic medicines, supplements, herbal medicines I had to repeatedly pay for myself to stay on top of what I was being prescribed.
As well as the doctor appointments and all the prescriptions it was also recommended I have acupuncture. What made it feel more credible was the lady who did my acupuncture had a BSc in Acupuncture so I felt in safer hands. So on top of everything above I paid for regular acupuncture too. As well as the acupuncture I was also prescribed massage therapy so that was an even further regular expense that I paid.
Another hidden expense was the fact that I can’t drive due to my seizures so the vast majority of the time I paid for taxis to and from my various appointments at this integrative health centre.
I also once had a session with the nutritionist at the centre and started the macro diet she recommended me in the hope that would help my fatigue. She did offer for a further fee to draw up a meal plan but I couldn’t afford this.
Even though I wasn’t seeing much change in my health I kept going to this centre for quite some time. I think I just kept going for the acupuncture and prescribed massages and seeing the doctor and paying for my various prescriptions and following this macro diet hoping that eventually everything I was doing would soon kick in and I’d start seeing an improvement in my symptoms. I did feel some improvement just a little occasionally but it wouldn’t be a permanent improvement or a significant improvement.
I finally stopped going as the appointment fees kept slowing increasing and it got to a point where one appointment was just too expensive and I wouldn’t be able to financially continue going to the centre.
I think it was then that I realised that financially I couldn’t continue with what I was doing and upon reflection I realised that I hadn’t seen the changes in my health I’d hoped to see when I first set out on my first appointment. It wasn’t until later that I reflected upon how much money I’d truly spent desperately trying to get well and still to this day I daren’t think how much I actually spent, or wasted, trying to pay to get well. Yes I had turned some tests the doctor recommended down because of the cost but then what about everything else I’d paid for. I felt totally gullible for all the false hope I’d been given.
This hasn’t been the last time I’ve paid for something in the hope it will help me. I tried, twice, this gut live good-for-you bacteria drink. This time I paid for it on a discount and didn’t go for it full price as the full price monthly cost would have been too costly. I think I’m a bit wiser now about not falling for the price of false miracle cures.
I think chronically ill and disabled people are more vulnerable to these products and to clinicians who are trying to sell miracle cures because we so desperately want to be well again, or have some relief from our symptoms. These products and treatments are often not cheap and many of us are unable to work or can only work part-time so our income is limited and disability benefits like PIP only stretch so far.
I know a few of my friends, several of which have M.E., have turned to private healthcare to get the care they need because they’re not getting it on the NHS. I know I’ve contemplated seeing a private M.E. specialist myself too for the same reasons. It’s not fair that we’re having to pay or fundraise for own care when we have a National Health Service but often it’s a postcode lottery as to where you live that determines what specialist services you can access - and don’t get me started on GP’s, that’s a whole post for another day.
I still pay for some things, like my massage therapy with Hollie but I now know in reality that it’s not going to be my magic cure and it’s not going to make me completely better. I know that it just supplements my care and I find it helps give me some relief but it won’t make a permanent change or improvement. The same for the supplements I take, they’re just supplements, not magic pills.