When you live with any illness, getting through the day can be tough. Trying to get a diagnosis, dealing with a diagnosis, undergoing treatment and then learning to recover and adapt.
I’ve been living with my condition for almost 8 years and I’m a big advocate of keeping busy, keeping active and keeping my mind occupied. Despite this, there are times with a chronic disease, an invisible disease, an incurable and long-term disease including cancer, occasionally just doing nothing can be very productive in the long term!
Of course, sometimes you have little choice if you’re ill from your condition or something routine.
So now and then, I just breathe in and breathe out (then repeat). It’s very enjoyable!
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 she is heading for 50,000 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.
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I look well but you should see my insides – click here
I’ve never really understood why people get upset or annoyed when someone tells them they look well. Maybe I just think differently than others? I like to look for the positive things these well-meaning messages can convey. Most people are just trying to be nice, even if it comes over clumsy. Personally, I love it when people tell me I look well, I mean who wants to look unwell? If I’m feeling mischievous, I sometimes say “yes….. but you should see my insides“. Most of the time, it dispels any awkwardness and they follow my laughter.
Yesterday, I listened to a few video clips of a very inspiring young lady who eloquently delivered her view of what it is like to have an invisible disease and still look the ‘perfect picture of health’. She did it in such a way that I could never do and I guess she feels the same way about looking well on the surface. This is a lady who has a very rare disease and struggles with enormous amounts of pain. However, you wouldn’t think it to look at her. I think her messages are really worth listening to.
If you can’t see an illness, is an illness really there?
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. I have two, one from NET Patient Foundationand one from Macmillan Cancer Support. You can order these online (links given) and I’m sure other national advocate organisations do similar things.
I applaud Asda for their initiative. Lets hope it catches on anytime soon!
In 2014, Chris and I walked 84 miles along Hadrian’s Wall on the English/Scottish border. It was a fantastic experience and we met some really interesting people on our 6 day journey. On the 4th night, I encountered a lady who was pretty rude. I wanted to say something but I was with Chris and other people were also present, so I kept quiet. I later discovered this lady was autistic and I was therefore relieved I hadn’t responded to her initial rudeness. However, It got me thinking about the number of times I had perhaps been too hasty to judge people in the past without thinking about what’s going on inside their heads and bodies.
Visible Illness can have awareness benefits
Conversely in 2018, I was absolutely humbled when I met a Parkinson’s disease patient. I had ‘noticed’ Matt prior to meeting him, mainly because he had difficulty walking. When he was talking to me I had to really concentrate because his head, arms and legs were constantly going into spasm. His speech was also affected. Despite his very clear VISIBLE illness, I can say he is a fantastic advocate for Parkinson’s. He told us that he has no issues with people staring or looking at him as he makes his way around and that is his key marketing point – himself. He uses the fact that people notice/look/stare as opportunities to get talking to them and he is a living breathing advert for Parkinson’s. I had no idea Parkinson’s had these effects, I thought it was just the shaking hand thing that you often see on TV programmes.
So things are sometimes not what they seem with VISIBLE illnesses just as they are with INVISIBLE.
NETs can be invisible before and after diagnosis
I know from reading and participating in Neuroendocrine Cancer (NETs) forums that many patients with my own condition frequently encounter people who clearly do not understand much about the effects of NETs on someone’s body (and mind) and day-to-day living which for many can be described as a struggle. I read one story about a lady who was accused by a co-worker of faking her cancer because she looked so well! How many of my NET patient readers have been told they look really well? This is something frequently said to me and I now respond with the customary “Yes, but you should see my insides“.
Not many NET patients are subjected to the rigours of chemotherapy and I for one am thankful for that. However, many NET patients have had some ‘bad ass’ surgeries and will be treated for the remainder of their life with (at least) large anti tumour and hormone inhibiting injections and perhaps other side effect inducing drugs. There is no 5 year or indeed any remission for many NET patients. What is incurable has to be endured! Moreover, they will be tested at regular intervals to ensure remnant tumours are ‘at bay’ and that no new ones have appeared. So the potential for a new or re-diagnosis is there at every single meeting with their specialist. All of that comes with a price in terms of quality of life.
I’m not trying to compete with other cancers or chronic illnesses, I’m just saying that a NET patient who looks well, may not be well inside – body and mind! Nor am I asking for pity – I am, however, asking for understanding.
When I read about some of the issues others deal with, I suspect I’m one of the luckier patients. I’m in reasonable condition and put up with a number of minor irritants which I suspect are due to the consequences of my cancer treatment rather than from Carcinoid Syndrome. However, one thing that does scare me from time to time is stomach cramps. Hopefully I’m not tempting fate as they seem to be reduced this year. However, when I suffer these, it does worry me, not just because they can sometimes be very painful and debilitating, but I know that I must go to the toilet ASAP. Handy if I’m in the house, not so handy if I’m on a plane, down town or anywhere where toilets are not in abundance.
I try not to let this problem stop me leading as normal a lifestyle as possible and as I said previously, it doesn’t really happen that frequently. Long flights are one of the few times I take Loperamide (Imodium) and for long drives and trips down town, I’m simply reliant on toilet availability. Sometimes I find only the disabled toilet is available and when it’s urgent I have no qualms about using it. Some of them are locked and you have to go get a key and again I have no qualms about asking for access despite my outwardly healthy look – nobody has argued yet. If necessary (sufficiently urgent), I’ll even ask to use the staff toilets in shops etc. I do have a card in my wallet which I obtained from my friends in the NET Patient Foundation but I’ve not yet had to use it ‘in anger’.
Are you nodding your head at these issues? I also suspect quite a few of you will therefore enjoy reading an article which has given me the inspiration and motivation to update this blog post. It’s about a lady who has major abdominal issues through surgery and illness (inflammatory bowel disease (IBD)) and to me this sounds like a worse condition than many NET patients endure. She too looks outwardly healthy but this illness is clearly a major disability. I’d like to think this type of incident is not that common but her response to it was magnificent, well written and apparently it went viral. What great publicity that must have been for IBD.
Read the post here, it’s brilliant: CLICK HERE TO READ (p.s. ‘Loo’ is British slang for toilet)
Thanks for reading
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