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How an Expert Patient Program Taught Me the Importance of Meeting Fellow Warriors in Person

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Since I discovered The Mighty, I think I have read a couple of articles on here most days. It has been a huge source of comfort and support to me in living with chronic illness, primarily chronic pain.

All of us who live with it know that chronic illness can be very isolating. The idea of constant improvement is central to the modern world, with every
advertisement suggesting that our lives will be transformed by the acquisition of a certain product, and every lifestyle magazine promising to help you create a New You. Being stuck with something unpleasant has no place in this scheme of things, and can appear positively threatening. Many people find the idea that you simply don’t get better from some things so worrying that they would rather deny that your symptoms are really that bad (“It can’t really hurt all the time, she’s being dramatic”) or find some reason to blame you for it, so they know it won’t happen to them (“Well, I take care to eat healthily, so it won’t happen to me”).

It’s also not very interesting to keep moaning about the same symptoms. Most of us have listened to a friend discuss a problematic job or relationship for a
prolonged period and found that our sympathy starts to wane, however hard we try. Our particular collection of symptoms can also seem frankly bizarre to casual observers. How do I explain that I can carry quite large weights as long as I am standing upright, but leaning forward to wrap the lightest of presents hurts me every time? Therefore many of us became very selective about discussing our illness, because it just isn’t socially acceptable to reply to “How
are you?” with “Still rubbish, but it’s nice of you to ask” to most of the people in our world.

Thus it was brilliant to be told by my doctor about something that runs in my
part of the UK called the Expert Patient Programme. For six weeks, 10 of us with long-term medical conditions sat down every Monday morning with two instructors and learned about how best to handle our illnesses. We talked about things you would probably expect, such as the importance of pacing ourselves and the strain it puts on relationships. We also discussed things that were initially less obvious, such to how to avoid falling over, that were surprisingly relevant; I realized I do worry about falling and landing on my back more than I knew and it makes me nervous. We had all kinds of different chronic conditions, although most of us had dealt with depression and anxiety as a result of constant physical strain.

Our two instructors were both brilliant, and the course was very useful. The best bit, however, was the fact that I was taking the course with other people. Everyone had had some similar issues, which made us all feel instantly less alone. Everyone could sympathize with certain situations. Everyone also had productive tips to offer, both in terms of practical steps and about how to frame certain things in your mind to help with your mental health.

These things are all, to some degree, possible online. But it is infinitely easier to do it face-to-face. There is a certain level of honesty that is only possible when you are all in a room together, so everyone is just as vulnerable. I could also see firsthand that everyone was normal and funny and nice. I am sure the majority of Mighty readers are too, but you can’t be sure of that online!

Several of us have stayed in touch and meet up regularly for a coffee, and we certainly all understand if someone has to cancel. Three of the group have trained to be instructors on future courses, which I want to do too as soon as I am up to traveling by train. We are of a variety of ages and backgrounds, but we understand the huge constraints in each other’s lives, and do a nice line in gallows humor. I have had counseling to help me deal with constant pain, and it was very helpful, but this has been just as much so in a different way. I am sure it cost the NHS less money too.

So, if you can, find some people in your town who are in a similar situation. It may not be easy, but possibly your healthcare professionals or social media network can help. If you are in the UK and the NHS in your area doesn’t do it, tell them about the one at the Sussex Community Foundation Trust and invite them to follow suit. It is so hard to understand chronic illness from the outside, and it may be that our best source of help is each other.

Getty Image by jacoblund

Originally published: June 29, 2018
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