Pain Chronicles is a monthly(-ish) column from Caroline McDonagh-Darwin about coming to terms with living with a chronic illness. It will include funny stories and brutal honesty, with some thrown in chats with her mum Shaz, and other friends too, along the way.
Caroline’s note: I’ve written this month’s column along with my mum, Shaz. You can find my bits in regular type, and hers in bold (because she always is). Hope you enjoy.
I’ll always remember the doctors’ note I got at university so that I could type in exams rather than handwrite. The doctor mentioned I’d been doing the same in ‘A’ Levels. Inverted commas and all. I can’t quite remember how much it was, I think around the £30 mark. £30 so I could access the same education as my classmates. And disabled students’ allowance may have covered that, but the forms were arduous and I really didn’t have it in me to do it.
According to Scope, the Disability Price Tag is over £500 extra a month (or £1000 for 1 in 5 of us), often around half of our income. Plus, our money goes less far – 68p per pound for a non disabled person. This includes specialist goods and services, greater use of non specialist services (such as public transport), and higher costs for some services (such as insurance). And this is in a country with healthcare free at the point of access.
Specialist goods and services is a big one. Mobility aids, if you can get them from the NHS, are general clunky, ugly and functional, or very expensive to get privately. Occupational therapy can get you some of the way there, but it’s a mixed bag and it depends on healthcare in your area. Even at the same (musculo-skeletal specialist) hospital, Shaz and I have had different experiences. The council will adapt a home you rent from them and you can even get a grant for renovations for access needs in your own home, but you will be on the hook for at least some of that cash if you sell within 10 years.
But it’s the sneakiness of private costs on healthcare that add up in this. As well as contending with long waiting lists and maybe deciding you can’t wait much longer. Or needing private notes from your NHS GP to allow you to sit exams.
I am unable to cut my own toenails due to various long term conditions and I used to get my husband to cut them for me but he would make them bleed. With diabetes, this can be dangerous.
My beautician said she couldn’t do them because of complications if she cut me with metal instruments. I tried to get access to podiatry on the NHS. I was told they don’t offer a toenail cutting service, I was told I would have to pay to see a chiropodist.
I researched how much it would cost. A first consultation cost between £30-£60. My nurse recommended one to me that is good but I will have to go approximately every 6 weeks.
The report does make a good point about poverty. It’s more expensive to have less money – your cheap stuff wears out and needs replacing more often, leading to a higher cost overall than if you’d had the money for the more expensive (and better quality) thing in the first place. And disabled people are more likely to be in poverty.
Additionally, disability often leaves you with no choice but to go expensive. Needing arch support to prevent crippling knee pain, at the age of 17 I was told “no more dolly shoes/ballet flats” – removing the most fashionable (and therefore cheapest) footwear option from me. And the insoles I need in conjunction with the built in arch support place extra wear on my shoes, meaning that by the end of 6th form college I’d been through more pairs of more expensive and hideous shoes than my pals had of £4 Primark ballet flats.
Having to go expensive initially may mediate some of the effect of poverty being more expensive (forgetting of course that you have to factor in whatever else goes by the wayside while you purchase) it comes with it’s own judgements.
One day I was out in Ormskirk, when I was approached by a man fundraising.
He was selling a joke book I thought looked flimsy and overpriced. I said “not today thank you” to which he replied “they are a lovely pair of boots, they cost a bit don’t they?” I told him I had rheumatoid arthritis, feeling the need to justify myself, and he said I was “lucky to be able to afford them” and shoved his crappy joke books at me again. Luckily my husband rescued me and guided me away.
The reason I was able to wear Dr Martens boots was because I had recently had my 50th birthday and I was finally able to afford footwear that would actually help improve my ability to walk independantly. Previously I mostly bought flat soled trainers, many of which were bought in charity shops. I have to spend at least £70 on footwear to have some semblance of normality.
On the way back he stopped me again, mentioning my boots AGAIN. It took a lot of self control not to scream in his face “I have to have them because if I don’t the pain is crippling”.
I think it feeds into this idea of having to prove you’re disabled as well. When you do get the clunky and functional stuff from the NHS (I’m sure they’ll provide you with some orthopaedic shoes if you ask, Shaz) then you’re playing the role of the good disabled person, and people like that man also then think you’ve no right to complain about the cost because “the taxpayer” paid for it anyway.
If you pay out of pocket to get something better for your own health they want to know why you thought that was necessary, and think they’re entitled to tell you it wasn’t. And if it’s not necessary, then they see it as a luxury. They see it as us wanting special treatment.
And that is really the end point of the issue, isn’t it?
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