17/08/2026
Living with an invisible illness means people often see what you do—but not what it costs you.
My two biggest health challenges are fibromyalgia and myelofibrosis, a rare form of blood cancer.
Myelofibrosis causes overwhelming exhaustion. I can wake up feeling as though I haven’t slept for a week—even when I have been in bed all night. I experience constant itching from head to foot, pain in my legs and anaemia caused by a lack of healthy red blood cells.
I am always tired, but that doesn’t mean I can always sleep.
I wear a Visible band and use its PacePoints to help manage my limited energy. Without pacing, I can push myself so far that I physically cannot wake properly the following day and lose the whole day to recovery.
Sometimes I use a wheelchair because it allows me to conserve energy and remain involved in life. It is a management tool—not evidence that I have stopped trying.
Yet I still hear that I am lazy, that I should get up, drink more water and keep active. I have also been told that using my wheelchair means I am not maintaining my fitness or managing my weight.
What people don’t see is the illness, the pain, the exhaustion or the effects my medication has on my body. Even when I have followed an extremely restricted, professionally supported eating plan, my weight has not responded in the way people assume it should.
It is frustrating. At times, living with the symptoms and judgement has affected my mental health too.
But these experiences are also why I started Health Matters.
I wanted to understand the questions that cannot always be answered during a short healthcare appointment. I wanted health information to recognise medication, disability, chronic illness, limited energy and the realities of everyday life.
Resting is not laziness.
Pacing is not failure.
Using a wheelchair is not giving up.
Sometimes these are the very things that allow somebody to keep participating in their life.
