I just don’t want it
A blog about the challenges of living with a chronic physical or mental health problem
A few years ago, in the early days of Common Room*, our director Kate ran a focus group with children and young people who had diabetes. She noticed a young girl seemed less engaged in the activities and sidled up to her to ask what was wrong. What she said has become Common Room legend.
“Some days, I just don’t want diabetes. I don’t want to check my sugars, I don’t want to eat right, I don’t want to be different from my friends.”
You might be thinking that this is obvious; nobody wants a chronic health condition. And yet this young person seemed to think that she was meant to just carry on, somehow coping with the extra pressures of diabetes without a second thought.
As people with chronic illnesses, we really get this. Most of the time, we manage medications, schedule inconvenient appointments, have procedures and hospital admissions and manage our conditions as if it is normal. We wince when someone calls us ‘inspirational’, muttering that we are just doing what anyone else would do if put in our position. But you know what, sometimes, we just don’t want it.
We don’t want to work harder than everyone else to achieve the same. We don’t want to miss another day at work because we are too ill to function. We don’t want cancel plans because depression is making our bodies feel like they’re made of lead.
Luckily for us, Common Room is run entirely by people with lived experience of health conditions. This means that we can relate to each other’s ‘I don’t want it’ days, understanding without explanation that managing a chronic health condition sucks. But what about our friend from the first paragraph? It seems no one had let her know that it is understandable, normal and reasonable to hate the effect her diabetes had on her life.
In healthcare services, it can be really easy to get caught up managing conditions. Doctors’ appointments are spent working out treatment plans and discussing medications. We can be left feeling that having chronic conditions should be normal, rather than acknowledging the fact that it’s really hard.
The NHS has taken massive steps towards understanding patient experience of their condition, creating more opportunity for patients to discuss the effect of illness in their lives. This is sometimes thought to be important only if it leads to changes in treatment to help them manage their condition. In our experience, there is also value in those conversations when there is no clear change to treatment. Simple acknowledgement that this is not ok, that having a chronic health condition is rubbish and that it is ok to have days when we just don’t want it is also of enormous value.
*Common Room is one of the organisations involved in developing #YPOpenTalk