This is not an attempt to bash people for making genuine mistakes. However, it is easy to make the mistake with people who have invisible disabilities, something now forming part of day to day life and many establishments now emphasise that in their bathrooms/toilets/restrooms.  Probably long overdue.  For the record, I don’t have a visible disability, nor do I have access to any special schemes or ‘perks’ to gain any advantage.  I quite like to walk and don’t really care how far it is to the building.  Now and then I do need short notice access to a toilet facility, thankfully it’s a rare situation nowadays but in my early days, it was more pressing.  I’m fortunate in that respect but I feel for many NET patients who comment in my group who have these invisible illness issues. 

Original Post

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 since 2010.  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.  That ‘perk’ has now expired but to be honest, my visits are only once or twice a year nowadays.   

I guess these issues are pretty common worldwide with some countries faring better than others.  That’s to be expected.

However, this story here is 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: