Complexities of Care

I’ve been unwell for over a week with a cold or some other miscellaneous virus I picked up from a colleague. While I’ve felt pretty ropey the illness itself has been nothing out of the ordinary, but it’s dragged on, and whenever I’m unwell, particularly with any sort of infection, the seizure-like intensifications of my tics increase dramatically.

Instead of having five or six of these a week, this week I’ve had 80, the longest of which lasted 47 minutes. They happen at any time of day or night and my sleep has been very disrupted as a result. Not only is this exhausting for me, but it’s also tiring for those supporting me. My pain has increased significantly because of how much wigglier my body is. None of this is new though, or really the main point of this post.

A greyscale digitally drawn image of a person ill in bed. They are in a profiling hospital style bed and are under a patterned duvet their eyes are closed. A black and white cat is asleep on top of them.

Yesterday, after I’d been unwell for eight days, Leftwing Idiot asked me to call the doctor because he was concerned that I wasn’t getting any better and that my seizure-like episodes were still frequent, suggesting that there might be an infection that required antibiotics.

It was a Saturday so I knew I wouldn’t be able to talk to my regular GP who knows me and my health conditions well. I also felt that talking to a doctor who didn’t know me could be pointless and that the illness on its own wasn’t severe enough to warrant contacting them on a weekend. So I decided not to make the call.

While Leftwing Idiot respected my decision, he also clearly disagreed with it and as one of the people providing round the clock care to me over the last week I can understand why he felt this way. We agreed to disagree and got on with the day which for me involved more resting.

As I’ve been lying in bed trying to recover, I’ve been thinking about my complicated feelings about medical professionals, and in particular when to seek help for health issues. I’ve received a lot of incredible, compassionate, and skilled care over the years. I’ve also had many upsetting experiences. A good number of these have involved assumptions being made about me, my capacity, or my quality of life because I’m a disabled person.

For many years I internalised these difficult experiences and blamed myself, believing that I wasn’t a good enough advocate, or that they were ‘minor issues’ in a system under pressure. Sometimes this idea was reinforced by other health care professionals. For example, after a particularly distressing experience when receiving a specialist treatment, I talked to my consultant about what had happened. While she understood the issue, she explained that the person I’d seen was the only doctor able to offer the treatment I required, so I would have to go back to them.

Cumulatively these experiences have had a big impact on how easy I find it to go to the doctor, particularly those who are new to me. The emotional impact is bigger and more complex than I can understand or explain.

A few years ago, I realised that I could love the NHS, appreciate, and value the skill and hard work of individual medical professionals, recognise the incredible impact good care has had and continues to have on my life, and at the same time acknowledge that the system itself can be institutionally ableist. Accepting this has helped me feel more patient with myself.

For now, I’m going to focus on resting and getting better and I’ll call my GP tomorrow and discuss what’s been happening.

I’m sharing this because I held the weight of all this close to my heart for a long time. It felt ungrateful or disloyal to say anything critical about the NHS. I suspect there are other disabled people with similarly complex feelings and responses. If that’s you, I want you to know you’re not alone and that for me, making space to think about and acknowledge this complexity has helped.

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