‘For me, courage comes in the form of us getting on with life in spite of feeling dreadful on a regular basis.’
I have been suffering with a hidden condition since 2011 but until recently kept waiting for it to ‘figure itself out’.
As my mother recently passed away from a disease with similar symptoms, the anxiety around my condition has grown and, for the last two years, I have been suffering with panic attacks. I have a young child and the condition has also impacted on my relationship with him and my husband at times. Apart from visibly losing a lot of weight during a flare-up, no-one knows there is anything wrong. I find it difficult to speak about my condition and feel that people don’t take it seriously.
Having routinely avoided seeing GPs about it (after receiving little to no long-term help from them), I have found the most helpful research coming from my own findings in the online community.
My symptoms are: a swollen/full tummy, being unable to go to the loo or having to go ‘right now’, bad breath, acid reflux, burning oesophagus and dreadful tiredness (exacerbated by sleep disruption from the pain). However, I would say that depression is one of the worst symptoms, and it is a vicious cycle.
‘I find it difficult to speak about my condition and feel that people don’t take it seriously.’
My husband began suffering with the same condition around a year ago and we have both concluded that although there are food triggers, it is mainly stress related. He feels unable to take time off work for the condition as it is so little recognised and, perhaps due to the psychological connection, seems a taboo subject, particularly for men.
For me, courage comes in the form of us getting on with life in spite of feeling dreadful on a regular basis. It’s knowing you have to make life changes to adapt to the condition, which probably will never go away, although I now know that I can prevent or reduce flare-ups. It’s accepting that my life isn’t going to be what I had imagined. I probably won’t run that marathon or be that supermum or have that super career, but instead I’ll find happiness in the simple things in life.