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Chronic Illness and the Pause Button

By Sophie Reason

For years, my life ran to a steady rhythm, and autumn was the epitome of new beginnings. Along with the crisping of the leaves came the challenge of a new school year, and I assumed that university and a graduate job would promptly follow on from this. Since becoming unwell with endometriosis, autumns have been framed differently in my mind; they represent a season when I am either on track or have had to pause for medical reasons.

Namely, this week I had to extend the suspension of my MA due to medical investigations. I have often found these periods of being especially unwell like being stuck in an Alice in Wonderlandesque world; as time charges on around me I am stuck in a trance of appointments, treatments, and rest. Yet, I have realised that defining something as a ‘pause’ or ‘separation from reality’ damages my perception of my current daily life. Previously, I have pushed through time out and dashed for an unpause button, attempting to return to routine like no time has passed and there are no consequences of my illness. Whilst I believe we are all on our own timelines and that patience and flexibility are key, the truth is that life does change and move forward when I am ‘pausing’, and I am often tired or feel differently to before. It can be hard to reconcile myself to this, when I feel I am achieving nothing and that my life is on hold; I am an advocate of getting the frustration out and admitting how tough and unfair it is. Yet, instead of banishing these periods of time from my yearly calendar of what I achieve, I am learning to accept that every day counts, whether I sleep for 12 hours, socialise, work or anything in-between. Whilst my studies may be paused, my life is not, and there is no rush beyond doing what’s best for myself whilst being self-aware.

It has taken time, but by admitting that being a patient is an essential and time-consuming job I have become more grateful and less resentful towards this time. I have done things I am proud of, made special memories and progress towards a healthier life, even if the timeline is a bit wobbly and unpredictable. This time is valid and has involved expending emotional energy, discipline and dealing with significant pain.

One day last week I managed to exercise, get another potential diagnosis, have a flare up, panic about the future and have a lovely family meal in the space of about 12 hours. It all mattered, and I am taking it day by day, grieving what I have lost, being curious about what each day holds, and letting go of my rigid categories of paused or unpaused.


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