Encourage me to take the rest I need
BMJ 2025; 389 doi: https://doi.org/10.1136/bmj.r765 (Published 01 May 2025) Cite this as: BMJ 2025;389:r765
- Ruth Segovia y Mayoral
- rsegoviaymayoral{at}gmail.com
I have always resisted defining myself by my illness. I am not a “sick person.” I am simply a person who happens to have an illness. But living with immune thrombocytopenia has shaped my life in ways I never anticipated. For years I minimised my symptoms, trying to convince myself that if I could push through then everything was fine. But the fatigue that accompanies the condition has been my constant and unpredictable companion. As a result, I have struggled with feelings of inadequacy, stress, and isolation.
In the early stages, the fatigue would come and go, coinciding with flare-ups. As I tapered off medication, I regained some energy, but even this created an unexpected challenge. I felt compelled to make up for lost time, both socially and professionally. I pushed myself to get back to “normal” as soon as I could. The cycle was exhausting. I once requested medical clearance to return to work earlier than I should have, only to find myself overwhelmed by months of crushing exhaustion.
My body’s way of demanding care
My condition has evolved unpredictably. At first, my red blood cell levels would drop; later, my platelets became persistently low. I even experienced a decline in white blood cells on one occasion. Stress seemed to amplify everything. Whenever I felt I was reaching my limit, I would experience another drop in platelets, forcing me to rest. At times, I saw this as a strange form of self-protection, as if my body were demanding care when I refused to acknowledge my own needs.
I’ve learnt that accepting my condition is an essential step in helping me take the rest I now know I need. I have also found that practising meditation helps me listen to my body and allow myself rest without guilt. I wish health professionals would encourage me to take the rest I need. A “prescription” for rest would have helped me to take my condition seriously and really recognise the importance when I was struggling to do so.
Please acknowledge the impact
My experiences within the healthcare system have been mixed. My current team is incredibly supportive. We have made shared decisions at critical moments, helping me to feel empowered and heard. However, I was not as lucky at the beginning of my illness when I encountered professionals who lacked empathy and sensitivity towards what I was going through. This lack of understanding and support made it even more challenging to navigate my condition and accept the accompanying fatigue and need to rest.
What I need from my doctors, more than anything, is acknowledgment. Not just of my lab results, but of the full impact this condition has on my daily life. That kind of understanding would make me feel seen and would make managing the disease less isolating.
What you need to know
Fatigue is a common symptom of immune thrombocytopenia and its unpredictable nature can affect a person’s life in many ways
Understand the value of advising rest in a society that prioritises busyness and productivity
Acknowledging the impact validates the patient’s experience and helps them to feel less isolated in managing the disease
Education into practice
How could you ensure that someone experiencing unpredictable fatigue feels able to take the rest they need?
What could you do to help patients feel you are acknowledging the impact of their condition?
Footnotes
Competing interests: none.