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Why Brexit Terrifies Me as a Chronic Pain Patient

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Those of us living in Britain at the moment are in the power of the old Chinese curse: May You Live In Interesting Times.

Whether you wanted the U.K. to leave the European Union or not, it’s certainly the case that no one currently knows whether or not we will, as I write this at the start of February 2019.

If you haven’t been following our recent history, we voted to leave in 2016 by a narrow margin and the deadline to do so is coming up at the end of this March. If we do leave, we may do so on fairly organized terms, or we may crash out without an alternative deal with the EU in place. Parliament is divided as to what to do. Essentially our MPs do not like the deal that the government has spent years negotiating and have turned it down, but no one can agree what to put in its place.

It is also proving impossible to square the circle that Northern Ireland wants to stay part of the U.K., and the rest of Ireland wants to remain part of the EU, but no one wants a hard border between the two as it will serve as a reminder of the many years of fighting in the region. So leaving without a deal is looking increasingly likely. This will cause widespread disruption after 40 years of being part of a union with Europe. There are thousands of civil servants working on contingency plans, and there have been warnings from retailers and from the head of the NHS that shortages of food and medicine are likely, even though precautions are being taken.

There are people who say it will be worth a little short-term pain to gain our long-term independence. I doubt this: I am firmly a Remainer who thinks leaving the EU is a illogical decision, and that another referendum would now be won by our side. However, my parents, who voted in favor of Brexit in the referendum of 2016, are as horrified as I am about how little certainty we have with the March deadline to leave approaching so rapidly. Like thousands of others who voted for Brexit, they didn’t think the picture would be so confused this late.

There are those who think we should just leave with no trade deals in place, and the EU will be kind to us to save their own supply lines, and allow us to fudge the Irish issue. I am not confident about this. These people seem to forget that we were the ones who wanted to leave, not the 27 other nations involved, and the EU is under no obligation to do anything of the sort. Neither does it want other nations to be encouraged to leave.

Leaving without a deal — which Parliament has not ruled out doing — seems to me to be to be a terrifying risk. I take eight different medicines, chiefly for chronic pain, and my son takes four to control his asthma. Any of these being hard to obtain will have a huge impact on our lives. I have tried to get slightly ahead on ordering, but the NHS understandably doesn’t want individuals building up stocks of expensive medicines that may get out-of-date before they are used. Or, in the case of prescription-strength painkillers, are potentially dangerous to have lying around in large quantities. Thus there is little that I can do other than watch and wait.

I am reasonably hopeful, please God, that common conditions like asthma will be well catered for and that children will be first in the queue. I am less certain about how patients with chronic pain will be treated. We are not exactly looked after brilliantly by society at the moment. I have suffered from extensive back pain since 2011, despite major spinal surgery in 2013, and have lost my teaching career — and, indeed, the hope of any decent career —  over it. I have lost friends and security and freedom to travel, as I cannot sit for very long. I waited for 15 months to successfully appeal for Employment and Support Allowance, even though I was only entitled to it for a fixed period. Others I know in similar situations have seen their marriages break up and family support melt away. And now, as if all this were not enough, we are going to have to live with uncertainty about our prescriptions being filled, possibly for years, until all this is sorted out?

Make no mistake about it, our demands will not be at the forefront of anyone’s minds when it comes to contingency planning. Any strong painkillers in limited supply will, quite rightly, go to acute, life-threatening cases. It is possible that even some medics will point out that painkillers are not, after all, a very effective treatment for chronic pain, so perhaps we should find another way of coping. Some people may even consider us drug addicts who would be helped by coming off our meds, even if we have never once exceeded the stated dose or abused the drugs in any way.

I have tried, and continued to try, all the non-pharmaceutical ways of coping. I have more resources on mediation and mindfulness than most bookshops, and any physio would be proud of my collection of various devices to help with stretching, or massaging, or heating and cooling. Like thousands of others I take painkillers every three to four hours, night and day, because I cannot function otherwise. I would rather not be doing this, and yes, I fully admit the drugs don’t totally kill the pain — but they reduce it enough to get me out of bed to take care of my children. They certainly aren’t there to get me high, and it seems likely they aren’t brilliant for my liver in the long-term either. I take them because I have no other choice.

And now, because the politicians in all parties seem to be unable to get together and work this out, I am constantly worried about what is to come, and I am sure most people with chronic illness feel the same. In Britain you grow up thinking that the NHS will always be there for you, even if the waiting times for routine things can be long. (It’s our compensation for the weather!) Now I see the prospect of having to dole out my pills carefully, of missing out on even more activities than I already do, and of being in even more pain. I see having to let down my family more often. I see feeling terrified during a flare-up that this time I really cannot cope.

This isn’t scaremongering, those of you who support Brexit: it’s genuine, heart-stopping fear. I will be happier than anyone if it turns out to be groundless.

Getty image via Tanaonte

Originally published: March 29, 2019
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