Expand your mind. Challenge your perceptions. Discuss, discover and exchange.
Unconventional Wisdom is for the brave individuals who are ready to fully open their minds to other opinions. Research has shown that we often defend our current views and disregard anything contradicting them because that feels the safest option. We live in a world where reflection is on the decline and emotional reactions are on the increase. Opt out of the reactivity, opt into careful examination of the facts. Let’s discuss things calmly, with logical reasoning. Join us as we re-examine common assumptions and popular behaviour across a wide range of topics. Feel free to submit a post (the more logical and backed up by facts, the better) and feel free to comment on posts – respectfully, of course. Each post will remain anonymous to protect the writers from trolls.
A system that is designed to eliminate fraud but has unwanted effects
These days the conditions for getting disability benefits and a blue badge are so extreme that many people who are genuinely in need and should be eligible are finding it difficult to qualify. There have also been many instances of the assessors deliberately lying or trying to catch out participants . For me, hearing about this has definitely made me quite anxious about assessments, especially because I look fine. I can be totally exhausted and in extreme pain but I’m young and not naturally very expressive and you really can’t see it just by looking at me. You might see it if you know me and you’re looking with a sympathetic eye, but if you’re looking to fill quotas and save the government money, you could easily decide I look totally normal. Many people going through the process of applying for benefits are aware of the instances where assessors have disregarded what they have said instead commenting on how they looked and other superficial observations . Unfortunately for many young people with severe degrees of conditions such as ME/CFS, MS, EDS, Fibromyalgia and so on, they feel a pressure to demonstrate their disability by walking in more agonised way, turning up at the assessment in pyjamas, using a stick etc. Something the majority of people don’t know is that pain is often delayed, so even if someone isn’t looking agonised now, they may feel it later. I’ve noticed that there has been some adjustment to the application forms to cater a bit more for fluctuating conditions and invisible illness but there’s still some way to go. It’s unfortunate that the very honest people who don’t exaggerate their condition at the assessment are possibly more likely to lose out than the (rare) people who are actually fine and made the whole thing up, and who are probably seasoned actors. Every time I have an assessment (and there seem to be many! Plenty of bureaucracy for the sick!) I do feel a pressure to look ill and in pain (which I often am), but at the same time I worry they’ll see me at another moment looking well and think I’m faking the whole thing! It’s a minefield!
A topic that’s hard to discuss
Another reason I feel like people think I’m faking it is because I rarely talk about how my condition affects me. It’s quite hard to fit into conversation sometimes, people rarely ask and it’s inevitably awkward, as you feel like you’re fishing for sympathy, and sometimes you get pity, or, alternatively, disbelief, which can be quite depressing/upsetting. But I know I need to discuss it more, because it’s just not something people know about, and I’m doing all these ‘odd’ things like sometimes using a stick/wheelchair and other times looking like I walk fine.
I think this is also an area that can really confuse people. I’ve found myself thinking ‘so-and-so is always laughing so he can’t be depressed’, and I’m sure that’s not the right way to look at it! I also knew a guy who stayed up all night before his assessment so he’d look ‘more obviously depressed’ by being dishevelled.
What can we do about the situation?
If you have a hidden disability:
Try to talk about it more – it’s hard, but I know I need to do this
Share this post with people, or similar posts
Challenge any suspicions you may have about other people
If you don’t have one:
Challenge your suspicions and try not to be as judgmental as we are encouraged to be
If you find out someone you know has an invisible illness, say something like ‘I’m interested how the condition affects you, if you don’t mind sharing, so that way I can be more considerate about it’ – they’ll love you forever! And a lot more things will make sense. Do bear in mind they may only give you an edited version though, as actually detailing all the effects could take a long time for some people!
Feel free to ask questions such as ‘how does it feel when you walk too much?’ – but make sure your tone is not suspicious or judgmental! Most people with invisible illnesses feel very judged already.
Try not to expect people to look how they feel, and try not to assume it’s much worse to be physically unable to do something than to be able but only with significant negative effects.
Try to read some or all of the blog posts in your feed about invisible conditions so you learn more.
What are your thoughts and experiences on this topic? Comment below!
If you found this post interesting, you might also like other posts on disability issues:
It feels like an absolute minefield having an invisible disability. At first I didn’t much care how people might view me. I’d never been very bothered about anyone’s opinions on my quirks, at least not since being a teenager. So when I had to start making adaptions to my life to not be in hellish pain and deathly exhaustion all of the time, I did, and anyone who found it odd could think whatever they wished. Not anymore though. Now I’m more ill, receiving disability benefits because I’m too ill to work (any offers of work that involve the equivalent of writing a blog post per month, in small segments, are most welcome via the contact page!). And every day I feel like people are thinking I’m faking it, and might even report me to the Department of Work and Pensions.
The black and white ‘can or can’t you?’ perspective
People generally see disability in very black and white perspectives, with no shades of grey. I wrote more on this in a previous post so I’m not going to go on about it here, but basically people do not expect wheelchair users to get up, even though many use a wheelchair because they can’t walk all the time or walking too far brings on a lot of pain and exhaustion that goes way beyond how a normal person feels after going for a hike. This can also be called the ‘can you or can’t you?’ perspective. Can you walk, or can’t you? Can you get out of bed, or can’t you? Society finds it relatively easy to understand people who find it physically impossible or extremely difficult to do something, such as climb up some steps, or cut up food; people who can’t lift their arms or legs into usual positions, or look extremely unsteady. It hasn’t really yet got its head around people who can sometimes do those things fine, and other times struggle, or who can do things, but will be exhausted or in agony for the rest of the day.
Why do people struggle to understand invisible illness?
I think in many ways it’s just part of our collective consciousness. It’s easier to compute when someone clearly can’t do something than when they say it’s a problem for them. And, unfortunately, our collective consciousness is also very much on the alert for benefit cheats. When I see someone get up from a wheelchair and walk, I think it too, even though I do that too! I immediately challenge the assumption, but it was there. I think this comes from:
The media obsession with benefit cheats
A very British grin-and-bear-it attitude where self-care is not viewed as positively as forcing through pain and exhaustion
The dissatisfaction many of us have with our jobs and envy of anyone who might not have to work, especially if we think they might not really be that disabled
The undeniable existence of laziness and the fact that some people might just want a blue badge for selfish reasons, for example, but I think these people are quite rare. But as we’ve all experienced laziness on occasion, some more than others, maybe it’s easier for a fairly healthy person to imagine laziness than chronic illness?
You know when you feel the security guard is watching you, and suddenly you feel really shifty? It’s a lot like that. I feel like I’m tying myself in knots sometimes. Having grown aware of the black and white mentality about disability, I sometimes do things to signal my invisible disability, such as walking with a stick. I don’t really need the stick, but it signals to people in a visual way that I have a mobility issue. In the past, people often walked far too fast, or never gave up a seat for me when I needed it, or even asked me to vacate my seat, or made comments about it being lazy to use the lift. I suppose I could have gone into long conversations about my invisible condition, but the stick is a shorthand, and prevents these awkward conversations. On the other hand, some people might see that I don’t massively need it, and it must be very odd to my housemates that I only use it to go out.
I’m not a fraud – I genuinely get extreme levels of pain from walking, which keep me up at night and leave me exhausted the next day. I do need to manage how much walking I do in order for me not to turn into a zombie – a pained, irritable, mindless zombie. But people expect those with mobility problems to walk like a very old person might walk: laboriously, unsteadily, looking agonized. Some people end up putting that on, because it’s what people expect, and you’re much less likely to be believed worthy of disability benefits or a blue badge if you walk completely normally and they just have to take your word for it that you do need to manage how much you walk. I usually get my GP and friends to write letters about how my disability affects me and even to mention the fact it’s an invisible illness in order to prepare people assessing me.
I’d love to hear your thoughts and experiences on this! Comment below! Also keep a lookout for Part 2: coming soon. Take care! x
Here’s my pick of food-for-thought iplayer documentaries (and nothing about Trump or Brexit I promise! You can find quite enough about those without my help!). They’re all quite easy watching in fact.
The music industry
This is interesting whether you’re a Kate Nash fan or not (I wasn’t at all familiar with her work). She tells it she finds life in the cut-throat music industry, which can be pretty different to how most people imagine.
Get up to speed on men who have transitioned from female who de-transition in order to give birth… a fascinating watch, though you may wish to skip the birth scenes if you’re not keen on such things! It’s not graphic but even so, the moaning isn’t for everyone…
Bear with me, because what I am about to say cause you to feel defensive or want to click away. Please keep reading. We overuse physical prompts and support in special education, and we are setting up our students to be hurt in their lives. Whatttttt? Hurt? Yes. Hurt. One in three children who receive […]
I am not a fan of Robert Heinlein. There are many reasons for this but one of them is about the traits of his novels’ heroes. They are often ‘The self-sufficient man’. The fellows could do everything themselves thus never needing help from others. Mr. Heinlein extols his readers (mostly boys) to be likewise and he castigates thems who do not. […]