Are they exaggerating their disability and, if so, why?

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 [2]. 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 [1]. 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!

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How useful it would be if pain was visible! Unfortunately, it’s not. Photo from Pixabay.

 

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.

Mental ill-health

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.

anxious looking girl
Those with mental health problems also feel pressure to conform to stereotypical images of anxiety and depression. Image by Pezibear from Pixabay.

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:

Feeling like a disability fake even when you’re not

Government finally reveals that more than 4000 died within six weeks of being deemed fit for work 

Reflections on asking for help

Tips on managing chronic pain

Re-examining ‘fear of movement’ in chronic pain patients

Don’t focus on my impairment, ask me what I can bring to the role

We’ve got to stop pretending disability doesn’t exist

Chronic pain: an unrecognised taboo

References

[1] https://publications.parliament.uk/pa/cm201719/cmselect/cmworpen/355/35504.htm#_idTextAnchor019

[2] https://www.disabilitynewsservice.com/wow-questionnaire-responses-show-assessors-are-still-lying/ and https://www.disabilitynewsservice.com/pip-investigation-welfare-expert-says-two-thirds-of-appeals-involve-lying-assessors/ and https://publications.parliament.uk/pa/cm201719/cmselect/cmworpen/355/35504.htm and

Feeling like a disability fake even when you’re not: judgments and dilemmas

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.

wheelchair-on-beach
Photo by Image by Adreas16057 on Pixabay. The caption was ‘Wheelchair Abandoned’ – I wonder if it belongs to an intermittent wheelchair user who’s gone for a dip in the sea or a walk on the beach. 

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?
DSCF1032 - Copy
Sometimes as a disabled person it can feel like there is a huge amount of judgment going on all the time, which makes the world feel quite a hostile place. 

Dilemmas

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

A great post about judging others with disabilities and dealing with such judgement: “How To Cope When You Are Feeling Judged” by Despite Pain

via How To Cope When You Are Feeling Judged

We don’t need to get physical. Post by “Be A Teaching Unicorn” on special needs support practices and how to change them to protect kids and help them thrive

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 […]

via We don’t need to get physical. — Be A Teaching Unicorn

Insightful post by Urspo on the usefulness of asking for help more, masculinity archetypes, and some tips: Spo-reflections on asking for help

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. […]

via Spo-reflections on asking for help. — Spo-Reflections

Government Finally Reveals That More Than 4,000 Died Within Six Weeks Of Being Deemed ‘Fit For Work’ (post by Kitty S Jones)

via Government Finally Reveals That More Than 4,000 Died Within Six Weeks Of Being Deemed ‘Fit For Work’

In my experience, and considering the usual newspaper articles about ‘benefit cheats’ and ‘scroungers’, most people think that the UK benefit system is pretty lax and a lot of people are exploiting it in some way. This post presents a starkly different reality, and shocking statistics even for those accustomed to hearing about how painful experiences of the benefit system can be for disabled people.

Managing chronic pain: tips you won’t find elsewhere

Since developing chronic pain, I’ve been surprised by the general unhelpful nature of information out there. My friends and family thought doctors would solve everything, but to be honest they didn’t do much to help me, and physio didn’t work for me either. I’ve written this post to share some of the things that really did work for me, and that I wish I’d thought of trying sooner. Don’t worry, none of it involves some weird snakeskin oil on Amazon or anything like that ‒ it’s all quite general stuff and best of all, it won’t cost you anything or take a large amount of time!

And no, I’m not going to do the usual and suggest you eat well, exercise and try to get a good night’s sleep.

Typical advice for managing pain can sometimes be quite depressing for those who have tried the suggestions already and not found them possible or helpful. So, time for some new ideas!

Analyse

I first began properly analysing on the advice of a speech therapist. She wanted me to map out the times of day when using my voice was painful and to note whether various things had positive, neutral or negative effects on it. Through this analysis, I discovered that steam inhalation helped, as did gargling, certain reflux medications and voice relaxation techniques, while other things didn’t help.

I continued this investigative approach for some time, playing around with the times I took medication (with my doctor’s approval) and the times I did inhalation and voice exercises. In particular, gargling and taking Gaviscon before making a phone call really helped, as did spreading out my reflux medications across the day and not talking in the morning until I’d done an inhalation and had a cup of tea to warm and moisten my vocal cords.

To get started, I’d advise you make a chart with each hour of the day down one side and all the things you can think of that might influence your pain levels down the other. Then note in each box when you’ve done something and what your pain level was. This will help you find trends.

DSCF1049
It feels a bit neurotic, but you can learn a great deal from making a chart to track your activities, meds and pain levels. You can also use one, after the analysis phase, to keep track of your daily targets and encourage pacing. 

When I did this with the leg pain I experience, I discovered that doing things earlier in the day and resting in the evening allowed my leg pain to ease off before bed – since pain when trying to sleep was the biggest issue for me, this was a great discovery.

If you have a chart like this, you can also use it to monitor the effects of medication changes or changes in physio exercises, and so on. You can note your pain levels out of 10 if you find that useful, or just describe it. By doing this, I’ve been able to clearly evaluate the effects of various insoles and changes to my routines.

There is a possibility that your pain is truly random, but you won’t know unless you investigate it.

Find your limits and decide when to be flexible with them

Once you are taking note of your pain levels and activity levels, you can more easily manage your pain. Of course, in some instances you will not have control over triggers e.g. work or childcare responsibilities. Some things you won’t be able to change. But you may still discover or think of adaptations that could help you at work or when caring for kids, such as ways not to do so much lifting (e.g. take files out of a box and lift individually rather than lifting the whole box) or ways to rearrange your time (e.g. taking kids to the park in the morning rather than afternoon).

Once you have done your best to arrange your medications and carry out activities in the optimal way, you can think about spreading your activities out over the day or week. For example, maybe you can do half an hour of cleaning daily rather than doing it all at once on Wednesdays. The usefulness of setting limits and spreading things out is that it may get you out of that boom and bust cycle where you constantly do a lot, get lots of pain and have to rest, then do a lot again… For some people, this will be unavoidable due to inflexible commitments but for many it will be possible to exert some control. While it can be annoying to have limits on how much you can do, it can also be amazing to have fairly stable pain levels and less unpredictability. You won’t need to cancel plans so much (if at all) and you may be able to stop using ‘flare-up meds’. Your friends, colleagues and family can also get some certainty regarding how much you can do.

angelo-pantazis-unsplash-people jumping in water
Pain management can be quite a fun-buster so sometimes you’ll probably want to be flexible and accept you’ll need a day or two off afterwards. Photo by Angelo Pantazis on Unsplash. 

You might also like to consider when you will be prepared to go beyond your limits and accept that you will have some flare up afterwards e.g. for friends’ birthdays, weddings, a favourite hobby, a work training day etc. If possible, you can then plan to take it easy on the following day(s), or take extra medication.

There is a risk your life will become less spontaneous and fun if you follow your limits strictly: it’s up to you to weigh up the pros and cons of such an approach.

Focus on pain-free parts of the body

This technique is really obvious in a way but it doesn’t crop up in many places. In fact, many will advise you to investigate the pain. This has some advantages e.g. you may realise it’s not as bad as you thought and you may be able to observe it in a less emotional way, even noticing there are some pleasurable aspects to it, such as some warmth or tingling. However, what has really helped me is focusing on pain-free parts of the body. Our mind tends to zoom in on pain. It wants us to be fully aware it’s there, presumably to encourage us to try to stop it. However, with chronic pain this focusing is useless and unpleasant. Keep taking your mind to a different body part, if you have something that’s pain free. It can even be a bit of a surprise to remember it’s not actually you’re whole body that’s in pain! And this may even help reduce the tendency of strengthened neural pathways to form between the painful body part and your brain.

An alternative version of this is imagining a soothing sensation filling the area where you have pain.

And finally…

Check out my post on how to prepare for a physio/hydro appointment, if appropriate

Remember that you are a hero, even if no one but you knows it. Living with pain is super hard and many people will not understand that but congratulate yourself every day for soldiering on.

Treat yourself with love and compassion when you accidentally go beyond your limits. We all do it, regularly, and you shouldn’t blame yourself. Learn to let go.

Cast off the ignorant remarks of ignorant people. Life’s too short. Seek support in those who understand, and try to educate people when you get the chance (see my post on the taboo of chronic pain).

Have you tried any of these tips? Or do you have some of your own? Comment below!

Warrior-fighting-dragons
This is you! Keep going 🙂 And don’t let anyone make you feel inadequate.  Pixabay image. 

Related links

Managing chronic pain:

Useful strategies, such as shifting your focus:

http://www.spine-health.com/conditions/chronic-pain/11-chronic-pain-control-techniques

A free meditation:

https://www.meditainment.com/pain-management-meditation

My favourite chronic pain bloggers, who have useful coping tips and strategies:

http://princessinthetower.org/

https://www.psychologytoday.com/gb/blog/turning-straw-gold