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Ronny Allan
I don’t look ill. I didn’t even look ill when I was diagnosed with metastatic and incurable Neuroendocrine Cancer. People have even told me I look better than many people my age who do not have an incurable disease! There’s a bit of me which is very happy with that predicament, although I’d rather look less good and not have cancer.
Many cancer patients have illnesses that cannot be seen, they are invisible. I know quite a lot of cancer patients who don’t look ill but I know they have a life-threatening disease and things could change quickly. For example, some cancer patients who look really well can need quick access to facilities such as toilets as side effects can sometimes not only be instant but also painful. Some just need a place to administer medicine when they need it, often this occurs in the most inconvenient places. There are many other ‘invisible’ problems that might strike at any moment.
Some patients actually avoid going on long journeys (or even short journeys), some avoid social activities and simply remain at home because their illness is unpredictable – they become very risk averse. And they look really well! And it’s terrible they feel they need to do this.
I know some patients who are classed as ‘disabled’ because of their condition (I’ll use the word ‘disabled’ as a generic term because the terminology differs from country to country). I guess some of them don’t look disabled (in terms of people’s perceptions) and on the outside look pretty well. Many people assume that ‘disabled’ means you have some physical deformity which is wrong when you look at various health criteria worldwide. Within these systems, there is also the possibility of a ‘disabled car parking permit’ (again a generic term as it might be called something different where you live).
On the subject of car parking, there are huge campaigns in UK about car parking charges for cancer patients. Many hospital car parks are on ‘private land’ and fees are levied. I’m not classed as disabled; I wouldn’t meet the criteria. However, I’m a frequent visitor to hospitals for tests/treatments and appointments. I’ve spent a considerable amount of money on hospital car parking in the last 7 years. The hospital I attend only provides free parking for cancer patients who are undergoing treatment (something I didn’t know for the first 4 years of my treatment). So, if I’m attending for blood tests, scans or appointments, there is no entitlement for free parking. A couple of years ago, I met with my local hospital about car parking for cancer patients and was delighted to obtain a free pass when I explained the sheer number of visits, I was making adding that it was probably for the rest of my life. I’m due to meet them soon to enquire about further plans to extend the current ‘treatment only’ benefit for cancer patients. If you google this issue, you will see plenty of comment! I guess these issues are pretty common worldwide with some countries faring better than others. That’s to be expected.
However, what is totally unexpected is this story which I will now lay out. It’s a reminder that you have no idea what’s going on in people’s lives.
Lexi Baskin is a cancer patient and was attending her hospital to have radiotherapy and has a ‘tag’ for parking as she is prone to side effects as a result of her cancer. She was legally parked in a disabled parking slot and returning to her car in Oct 2017, she found it covered in stickers – see here:
I guess that made her very upset. It makes me upset just looking at these pictures from afar. Lexi posted her story on social media and on twitter, her tweet went viral and so far, has been liked over 100,000 times and over 40,000 retweets (shares). Great awareness for invisible illness and the issues of car parking and perceptions. It even made the press – see below:
So, to whoever committed this cruel act – SHAME ON YOU! – you are a selfish and terrible person.
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
Disclaimer
I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me.
Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional.
Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals.
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People are so judgmental and think they know everything. It’s a sad state of affairs. Thanks for putting it out there, Ronny.
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Totally agree with ‘not looking sick’ my favourite is ‘You are looking fantastic and you’ve even lost weight’. I now have inoperable MiNEN tumours but the expert says I am a good candidate for PRRT. Starting another 6 months of chemo next week. But at least my hospital has a reduced parking fee for chemo patients. Living for the day.
“I’d rather look less good and not have cancer.” How true!!!
No free parking for cancer patients here. I’m thankful that I live in Canada where we have universal health care that covers most of the costs, but at the price of gasoline these days, frequent trips to the city for medical care do add up and parking fees are another extra expense.
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Cheers – will add to tomorrow’s nuzzel and RT later
Thank you for this comment. I stay house bound mostly due to the acute diarrhea issue you mentioned . . . Friends “get it” when they have the flu and quickly forget afterwards what an inconvenience it was but to those of us with long term cancer (I’m 9 years with tumors, 4 surgeries that take organs and in need of another surgery soon) that house bound wears us done. Triggers are everywhere, food smells, anxiety/stress, . . . I’m in the U.S. and since I have metastic incurable disease I now get SSD mainly because who’d hire someone who needs to use the facilities within one minute? I want to plan a trip to see my brothers and son and it is a 12 hour drive the scary part . . . through Los Angeles where I suddenly feel trapped. Good post.
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I’ve been a NET patient since Dec 2015 but also the parent of a young man who was diagnosed with ulcerative colitis at 14, so I was already quite familiar with the invisible-disability problem when it started happening to me! Crohn’s and colitis patients get challenged on parking spaces all the time.
I am usually on foot, bike or bus so have not needed accommodations for this yet, but my day will come. Right now, most of the incredulous looks I get come when I disclose my diagnosis.
Your cartoon “You should see my insides” sums it up incredibly well. Are you familiar with this organization’s website:
https://invisibledisabilities.org/
They have free content online which is also available in pamphlet form. When I see horror stories like Lexi’s, I fantasize about burying the offender in pamphlets.
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Thanks!
Shocking!
Needs highlighting, it’s a problem in many places.
Xx wishing you wellness 🙂
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