When I write about diabetes, I’m usually writing about technology, since I wrote my own tools to access glucometers’ data, and reviewed quite a few already. This time I’m taking a more personal view and talk about the way diabetes can affect one’s life. Please note that while I don’t expect anything that I’m getting to here to be particularly disconcerting, there’s still the risk that those more sensitive find this type of discussion harder to read and process, be mindful of your own sensitivities.
The most common knowledge about people with diabetes is that we can’t have sugars — which is kind of a myth, but it is not uncommon to misunderstand what’s going on when it comes with health, since most people do not like to discuss their own health or that of others around them. While in practical terms is indeed the case that most diabetics would avoid sugary drinks, and sweet desserts, there’s a lot more going on than just avoiding sugars, particularly for those suffering from non-type 2 diabetes.
Indeed, since my diabetes is “type 3” (derivative, or secondary — there’s a load of different nomenclature for it), triggered by the pancreatitis that nearly killed me 16 years ago I’m used by this point not to fit into most preallocated boxes. The history of how this all fits with routine health management is a story for another time and post, so I’m not going to spend time on that right now.
Indeed, relationship with sugars relates less to the cause of the diabetes, and more to the selected treatment for it. Insulin-dependent individuals (like me!) while still avoiding excessive sugars, need to be aware of their blood sugar level and their risk of hypoglycemia — that is, low blood sugar. Which is where flash glucose monitors have been such a life-changing solution for me. If you have been keeping an eye on FLOSS solutions for diabetes, you probably have heard about closed loop insulin pumps as well — well, that’s not really an option for me because the insulin I personally rely on is long-acting insulin, rather than rapid insulin, which is clearly a trade-off, but one that I’m generally happy about.
So whenever I travel, even if it’s just to go around town, I always keep in my bag sachets of sugars or glucose tablet — which can be quite the headache when you try to keep some in your trousers when going to a concert, and the bouncers pat you down… I never really had much of a problem with this when exploring cities, whether it was in Europe, North America, or Asia, but this has complicated many of the touristy paths that don’t involve a lot of human presence — when visiting Montreal I nearly collapsed from a low blood sugar in Mount Royal, but did manage to get to the cafe just in time with the remaining sugar sachet I had in my bag. You can imagine that I don’t usually go trekking, as much as I would enjoy it.
Now, choosing touristy destinations to be compatible with diabetes is annoying but it’s definitely not the end of the world. It might sometimes tick my wife the wrong way, since she’d be hoping to go on excursions I would need to be prepared for in advance, but even that is a minor annoyance most of the time (start with enough sugars from breakfast, make sure there’s refreshments available and/or take sugar tablets and other snacks with us and so on.) And thankfully, since I live in London, I don’t need to drive around.
Oh yeah that’s something that people who have not had close calls with diabetes might be missing here: depending on the medication you’re on, the various driving license authorities will take a poor view of your ability to drive. The UK Government makes it quite clear:
You can be fined up to £1,000 if you do not tell DVLA about a medical condition that affects your driving. You may be prosecuted if you’re involved in an accident as a result.GOV.UK – Diabetes and driving
And indeed the page is at least quite clear in telling you how to proceed, and not bothering with the usual terrible checkboxes of “Type 1, 2, Gestational” but rather based on the treatment options, choosing between insulin, tablets or other non-insulin injection, and diet. Which is honestly quite refreshing, except for the part where diet-controlled diabetes (which is also just as much of a risk of hypoglycemia in my experience) is explicitly marked as not requiring communication to DVLA.
What is not obvious in this page though, is that reporting your health condition to DVLA (and similar agencies in other countries) also means your driving license (and even learner permit) will be subject to further limitations: the health condition is encoded in your permissible use the same way as the requirement to wear glasses is, but most importantly you’re subject to additional scrutiny on renewal. Indeed I let my learner permit’s lapse because DVLA wanted a full blown renewal form to be compiled and filled in in the middle of the pandemic and I couldn’t be bothered to do that.
As much as I find this annoying, I do believe it is done with good intent and good reasons: even without passing out, hitting low blood sugar (below 4 mmol/L) slows down response times and in my case at least definitely fogs up the brain quite a bit, as I start slurring my speech and not being able to keep to a single language properly. And even a value below 5 mmol/L, which is generally considered pretty okay, makes me feel a lot more aggressive, which I can see being a problem on the road. As such, putting more care in handling of one’s blood sugar to be able to drive a car is not just a good safety measure for the driver, but also for everyone else on the road, whether they are driving, cycling or walking.
If you have never thought of diabetes as a disability, this might be a good time to change your mind on it. And indeed, at least in the UK where I live, diabetes is considered a disability.
You would then think, since DVLA is worried about people driving with diabetes, that the various combination of governmental agencies would try to instead incentivise those people to use public transport — but I’m afraid that’s not the case. To the best of my knowledge, none of the public transport disability schemes in the UK and London in particular cover diabetes.
The Disabled persons Freedom Pass issued by London councils do not cover diabetes. Their list of statutory disabilities include most severe ones, but in regards to driving only says:
People who, if they applied for the grant of a licence to drive a motor vehicle under Part III of the Road Traffic Act 1988, would have their application refused pursuant to section 92 of the Act (physical fitness) otherwise than on the ground of persistent misuse of drugs or alcohol.
But as I explained above, DVLA is not going to refuse to issue a license to people with diabetes — it just puts more limitations on them. There’s also a “discretionary” pass that depends on specific councils — but again my council (Hounslow) does not include diabetes in their list, since they don’t specify any additional disability for which they would issue their discretionary passes.
National Rail also issues a Disabled Persons Railcard, which instead of offering free travel offers a ⅓ of… for a fee. This is definitely a lot less interesting to replace one’s daily commute, but it makes sense for longer trips, even though you would have to spend at least £40/yr in (discounted) rail fares to break even. With those limitations in place, you could see their eligibility list to be significantly broader than the Freedom Pass — but no. Despite showing a much better understanding in terms of explanations (it lists effects, not causes), it even drops any references to the Road Traffic Act 1988.
Of course both lists also delegate to the government’s own definition by including Personal Independence Payment and Adult Disability Payment as eligibility measures. Unfortunately it is extremely unlikely for someone with diabetes to receive these payments, as it does not just require you to have a disability, but also «[have] difficulty doing certain everyday tasks or getting around because of your condition» to be determined by whether you need help with these tasks. And that’s going to be a tough one to argue for most people with diabetes.
Now, the elephant in the room is that obviously, in my own case of a well-paid techie who has no issue with crossing London multiple times a week for a commute, this is barely noticeable in the grand scheme of things. And work does refund me for most of my commute costs. But this is not just about me, it’s about all of those people with diabetes who could reduce both the risk to themselves and to other by using public transport, but are not incentivised to do so.
It gets a little bit more annoying considering that there’s more (but not a lot more) leeway to the issuance of Blue Badges (often referred to as “disabled parking”) which in a car-centric society like the USA is more understandable than in a city like London, particularly within the ULEZ (Ultra-Low Emission Zone.)
I just find it personally unfair that people living with diabetes are (correctly) put under additional scrutiny, but get no slack cut when it comes to make alternative transport arrangements! But somehow this does not appear to be a very well known issue — maybe this post will help to start the discussion.
If you know of how this works in other countries, please do let me know in the comments of the post. I’m unlikely to explore many of these when I travel as the tourist discounts are usually just enough, but getting to know about the options available beforehand is always good.