The range of emotions that come with a medical discharge letter

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On average I have two medical appointments a week. My record is seven in one week; a week with none is a true rarity. My record for one day is three. Those days involved a very harassed me dashing across London, finding myself in various waiting rooms having to take a moment to double-check with myself (and my file of medical letters and documents) which condition I was actually there to investigate, discuss or treat.

Sometimes, however, I get discharged from a particular doctor or clinic. This happened recently when I was discharged from neuro-otology, after being a patient for about six years, and dermatology, after seeing the doctor for about two years.

As someone with multiple chronic conditions who feels as though they spend most of their time either on a train to a medical appointment, in a waiting room before a medical appointment or, of course, at a medical appointment, this would seem to be a positive development. After all, it means that these doctors made an assessment of my conditions and thought that my symptoms were at such a place that I did not require their intervention or care any longer. In both cases, I am confident that the doctors were right in discharging me from their clinics. It was discussed with me and I agreed with their assessment of not needing their future care.

So why did I feel a sense of unease when the discharge letters arrived through my mailbox several weeks later?

Being under the care of a specialist doctor, in my experience, can invoke a range of emotions. Personally, I tend to feel an initial relief that my health concerns are being taken seriously, then fear about what the diagnosis will be, how I will react to medications if required, concern if I’m not responding to treatment quickly enough and then, on the rare occasion that I am discharged, a mix of happiness and unease.

The unease comes, primarily, from having to ‘go it alone’. In some ways, medical care can feel comforting. If you have found the right doctor for you, one that listens, empathises, considers you as an individual, and carefully thinks through diagnoses and treatments, then you can feel safe in their hands. It can be a relief to have someone take on the burden of managing your conditions and symptoms. There can be a sense of optimism that treatment will lead to the symptoms becoming less problematic. A possibility that the pain, fatigue or dizziness etc. will reduce and life might get a little bit easier. In short, there can be hope for a more positive future living with your chronic condition.

So going it alone can feel worrying at times. The safety blanket of medical care has been taken away. I’m left to it, so-to-speak. Lots of questions run through my mind when I am discharged from a specialist doctor. What if my symptoms get worse? What if new symptoms arise? What if my medication stops working? Or what if I want to reduce or even stop my medication after a period of time?

There are a lot of what-ifs. Perhaps some of those concerns are about what I am going to do next. Do I trust myself to be an autonomous patient? To keep on track all by myself. I know I will always take prescribed medication unless my primary care doctor suggests otherwise. But will I consistently do my physiotherapy exercises, and keep to any advised lifestyle changes? There’s a degree of ‘big brother’ about being under medical care. A sense of guilt if you don’t keep to the straight and narrow. After all, what are you going to reply when a doctor asks how the physio is going if you haven’t been doing it? I would guess that I’m not the only one that is slightly motivated by that potential question . . .

It is, hopefully, the case that I will be discharged from more doctors and clinics in the months and years to come. I know that this is a positive thing. It means that I can live a less medicalised life. Spend more time on myself and other pursuits. Hopefully it will mean that my symptoms are more under control and I can lead a fuller life. So I have to trust the process and the journey of my medical care and intervention. That it will reduce over time.

Mostly I have to trust myself. Trust that I know my body well enough to know what is a temporary flare of symptoms, and what requires medical intervention. Trust that I will practice enough self-care to continue with lifestyle changes that benefit my conditions. And trust that, however, boring it is, that I will do my physiotherapy exercises as I need to.

It seems to me then, that I have to transfer the trust that I place in good doctors onto myself. I have to trust myself to navigate the ups and downs of chronic illness. Be my own advisor, cheerleader and ‘big-brother’. Because, of course, it is only me that will benefit from improving my health to be the best it can be. And so the next time a discharge letter comes through the mailbox I will try and remember that it is a positive move forward, not a step back.

Chronic illness blogger at throughthefibrofog.com and on Instagram @through.the.fibro.fog

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