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I personally don’t see myself as ‘disabled’ but I do have an invisible illness. I’m fit, can walk for miles, I even look quite healthy. However, I live with the consequences of Neuroendocrine Cancer. These consequences differ from person to person but I know that some people with this disease have even met the criteria to be officially classed as ‘disabled’ through government schemes. Judging by what I read, I have less debilitating issues than others, so I feel quite fortunate. That’s not to say I don’t have any issues at all – because I do!
I was therefore delighted to see news of an initiative supporting invisible illnesses by Asda (for those outside UK, Asda is a major UK wide supermarket chain). Asda have now recognised that many conditions can be classed as ‘invisible disabilities’ and this need is now recognised in the availability of toilet facilities (see picture below). This is particularly relevant to my own disease, all types of Inflammatory Bowel Disease (Crohn’s, Ulcerative Colitis) or anyone who has issues due to the consequences of their cancer or treatment (e.g. GI surgery, Chemo, Radiotherapy).
I wrote an earlier blog on this subject called “Things are not always how they seem“. This was a great ‘invisible illness’ awareness message in the form of a reference to a newspaper article about a lady who had Inflammatory Bowel Disease (IBD) and was ridiculed by someone who saw her use a disabled toilet clearly unaware of her invisible illness. This is definitely worth a read!
I also wrote a blog about my own concerns focussing in on the issue of ‘Stomach Cramps’. This is something that causes me issues from time to time and I dread a painful occurrence if I’m ‘out and about’. I generally don’t let Cancer stop me doing stuff. Consequently, I will still visit remote places as I have done so for the last few years and have intentions of continuing to do so in the future. Fortunately, I have been lucky with my experiences to date. If I’m out and about including on holiday, I have no reservations about waltzing into hotels or restaurants where I know there will be toilet facilities. I’ll also use a disabled toilet if others are not vacant. My worst and most painful experience was in 2014 whilst I was walking along Hadrian’s Wall in remote Northern England – this is covered in my blog “My stomach sometimes cramps my style“.
I have not yet been challenged in my use of toilet facilities (without being a customer) but I always carry some ‘Get me out of jail’ cards just in case.
You may also enjoy these similar and related articles:
Things not to say to a cancer patient – click here
Shame on you! – click here
I look well but you should see my insides – click here
Things are not always how they seem – click here
Not every illness is visible – click here
Not the stereotypical picture of sick – click here
An Ode to Invisible Illness – click here
Poker Face or Cancer Card – click here
I don’t look sick, sorry not sorry – click here
Dear Doctors – there’s no such thing as a good cancer – click here
You must be doing OK; you’ve not had chemotherapy – click here
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3 thoughts on “Not every illness is visible”
What a good idea! My symptoms are completely under control for the time being, but how well I remember the terrible stomach cramps that I experienced before diagnosis. Of course, it never happened at convenient moments. The absolute worst episodes I experienced happened when we were touring a cave in Vietnam’s HaLong Bay and while on a shore excursion when cruising down China’s Yangtze River!
Yes, I’ve seen your travelling blogs. I guess even those without NETS might struggle in certain places!