physiotherapy – Unconventional Wisdom

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!

visible-knee-pain-pixabay — 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

The Tampa Scale needs amendment

There is a questionnaire used to supposedly identify ‘fear of movement’ called the Tampa Scale. While I would certainly agree that it is worth identifying which patients have wrong beliefs about their condition and the effects of exercise, I also have serious concerns over some of the elements of this questionnaire. It just doesn’t seem like a rational questionnaire, and yet is very widely used and, it seems, rarely questioned.

I’m going to start with my suggested alternative, then go over the items on the original Tampa scale that I think are not going to help identify mistaken beliefs that could be causing a patient to avoid exercise and activity.

Suggested alternative to the Tampa Scale (for identifying mistaken beliefs − obviously some are true and some untrue as in the original):

1. I need to move as little as possible to avoid injury	1	2	3	4
2. Just because something aggravates my pain that usually does not mean it is dangerous	1	2	3	4
3. Sometimes it is a good idea to exercise even though it’s painful	1	2	3	4
4. When people with pain gradually increase their level of activity, they often don’t experience increased pain	1	2	3	4
5. Although my condition is painful, I would probably be healthier if I were more physically active	1	2	3	4
6. Even though something is causing me a bit of pain, I don’t think it’s actually dangerous	1	2	3	4
7. Some people with chronic pain find that exercise reduces their pain levels	1	2	3	4
8. If I exercise less, I’ll get weaker and am then likely to experience more pain	1	2	3	4
9. Worries about injury put me off exercising	1	2	3	4
10. Pain always means I have injured my body	1	2	3	4
11. Pain always means I have injured my body	1	2	3	4
12. Simply being careful that I do not make any unnecessary movements is the safest thing I can do to prevent my pain from worsening	1	2	3	4

Now for my analysis of the original

The ones that make sense (ish):

3. My body is telling me I have something dangerously wrong. (I suppose ‘dangerously’ suggests an element of dramatization if the problem is not life-threatening etc… though surely more a sign of ‘catastrophising’ than movement avoidance?)

Similar to: 11. I wouldn’t have this much pain if there weren’t something potentially dangerous going on in my body.

7. Pain always means I have injured my body.

(Probably the most useful one in my view, as this is definitely false and a harmful view.)

8. Just because something aggravates my pain does not mean it is dangerous. (Very similar to number 7. Patients need to be informed this is true, if they are not aware it is. Though I would suggest amending it to ‘Just because something aggravates my pain usually does not mean it is dangerous’ because sometimes pain is a sign of danger, obviously! Pain can warn us we are about to tear or break something.)

10. Simply being careful that I do not make any unnecessary movements is the safest thing I can do to prevent my pain from worsening. (Does sound a bit extreme, and shows lack of awareness that inactivity may increase pain long-term.)

Related to: 17. No one should have to exercise when he/she is in pain. (Quite moralistic but I suppose passible. ‘Sometimes it is a good idea to exercise even though it’s painful’ would be better.)

14. It’s really not safe for a person with a condition like mine to be physically active. (Probably a wrong belief in most cases where the questionnaire would be used, so fair enough.)

The ones that are problematic either in general or for some conditions (such as Ehlers Danlos):

2. If I were to try to overcome it, my pain would increase. (Sounds like an unhealthy battle that might well happen that way! Pacing and acceptance of pain are surely more accepted approaches? How about ‘Gradually increasing my level of activity often doesn’t lead to increased pain’?)

5. People aren’t taking my medical condition seriously enough. (No comment needed surely?! Whoever thought that was a sensible one?)

4. My pain would probably be relieved if I were to exercise. (For many people this won’t be true, so strongly disagreeing is the rational option.)

The same goes for: 12. Although my condition is painful, I would be better off if I were physically active. (What does ‘better off’ mean? Why not say ‘healthier’? That would be true in more cases. Being physically active – another subjective term – might make some people less happy due to the increased pain and fatigue and so ‘better off’ might not feel appropriate to them.)

6. My accident has put my body at risk for the rest of my life. (Ambiguous. Surely accidents do create a greater risk of re-injury in many cases? Or does it mean at risk of death, which probably would be a wrong belief?)

See also: 1. I’m afraid that I might injure myself if I exercise. (In some cases this might be highly unlikely, in other cases quite likely e.g. if you have EDS and are prone to dislocations and sprains, even during very mild exercise).

The same applies to: 9. I am afraid that I might injure myself accidentally.

A related one is: 13. Pain lets me know when to stop exercising so that I don’t injure myself. (Again, is this really unreasonable in all cases? Since when was completely ignoring pain a good idea?)

And: 15. I can’t do all the things normal people do because it’s too easy for me to get injured. (People with EDS are generally advised to avoid contact sports, for example, so again this is not going to be unreasonable in all cases.)

Also: 16. Even though something is causing me a lot of pain, I don’t think it’s actually dangerous. (Are we really advocating that people do things that cause a lot of pain? I’ve generally not been advised to do that, and indeed if something does cause a lot of pain that could be a sign you are about to or have injured yourself.)

Are you a medical practitioner or patient? I’d love to hear your views!

Do also check out my post on re-examining the concept of kinesiophobia in chronic pain patients.

kinga-cichewicz-woman-sitting-in-window-enclosure — Do you think my scale is a better one for identifying when patients are being inactive due to wrong beliefs? Comment below! Photo by Kinga Cichewicz on Unsplash.

Re-examining ‘fear of movement’ (kinesiophobia) in those with chronic pain

(This post is especially relevant to doctors and physiotherapists and others who work with those in chronic pain)

What many physiotherapists and doctors don’t understand about chronic pain

In medical jargon there is the expression kinesiophobia, ‘fear of movement’. I’ve always found this an odd concept. It is said that many chronic pain patients experience a fear of movement because of associating movement with pain. So, the assumption is that they fear pain. Those with chronic pain are, by definition, those who live with the most pain. It doesn’t seem natural to me to talk of fearing something that is already a major part of your life. If you wear a suit to work every day – you may dislike it, sure, but you wouldn’t fear it, would you? You might wear it only when obliged to do so, and wear super-casual clothes the rest of the time i.e. you may well limit your exposure to it, but fearing it would be unusual.

Chronic pain is something only those who experience it can truly understand. It isn’t accurate to think ‘well, I know what pain is, so chronic pain is just having that a lot of the time’ (which those without chronic pain tend to think either sounds awful or not too bad at all). Prior to getting chronic pain I regularly played full-contact rugby. I loved it. I loved tackling people. I didn’t mind the bloody lip, the bruises and feeling a bit battered. Doing this once a week was, however, NOT a taste of chronic pain in any way. Nor was ju-jitsu, or taekwondo, or boxing. Nor was period pain, or toothache, or a headache. The relentlessness (and total pointlessness of the pain) is not possible to imagine until it happens to you.

quino-al-unsplash-rugby-ruck — Just because you’ve experienced pain, it doesn’t mean you know what chronic pain is like. (Photograph by Quino Al on Unsplash)

Imagine you enjoy sitting out in the garden when it’s sunny. One day it’s raining and someone asks you why you’re not sitting in the garden. Er, duh. It’s not much fun in the rain. Do you fear rain? No, it’s just not enjoyable sitting out when it’s raining. So why do some medical professionals really have a problem understanding that people’s preferences change when they live with chronic pain? If anyone wants me to live like I did prior to chronic pain, I want them to sit out in the rain, and enjoy it.

Movement avoidance isn’t necessarily due to fear of harm either

Now imagine you’re someone who enjoys going on walks and also reading. Imagine that you have the option to either read for a while or go for a walk while someone repeatedly stabs you in the neck with a fork, and you can’t stop them. I think I can guess what you’d choose. And what if someone tells you that, although the fork stabbing might be unpleasant, it’s not harmful. You’re still choosing reading, right?

Now what do you think about patients who avoid some pain-inducing activities, choosing to do something else instead?

Only when someone tells you that if you don’t choose the walk you’ll get unfit and get stabbed with a fork during even more activities would you reconsider.

head-in-clamp-pixabay — People need to be given a clear and meaningful reason to do a painful activity, otherwise it just won’t appeal. It sounds simple, but seems to get forgotten.

A common belief is that patients avoid movement because they believe pain signifies damage to the body. Well, I’m sure some people do, and it’s certainly right to point out that pain can be completely meaningless and unhelpful, as is often the case with chronic pain.

But that’s not necessarily going to make someone start being as active as they used to be, because some activities are just not appealing any more, or not as appealing as pain-free options. I get headaches watching films, so don’t do it as often as I used to, but have gained a great love for podcasts and audiobooks. I’m not scared of the pain watching a film brings on… I’d just rather do something else.

Of course, what really is an issue and what patients do need to know is that if they avoid all physical activity, they’ll lose muscle tone and may experience more pain in the long run. Knowing this will potentially reduce ‘movement avoidance’ in patients who are motivated by long-term goals; perhaps not so much others.

Also, I’ve come across a few things recently suggesting the role of physiotherapists when dealing with chronic pain patients is to get them moving more. Hmm. Well, if that’s what the patient wants, fine. I’m not totally sure, however, that everyone goes to a physiotherapist wanting to be persuaded to sit out in the rain more, or spend more time getting stabbed with a fork, to continue the metaphors.

christopher-burns-unsplash-tennis-player — I’m doubtful as to whether patients attend physiotherapy in order to be persuaded to do more physical activity despite the pain. (Photo by Christopher Burns on Unsplash)

More exercise doesn’t always mean less pain long term

As far as I’m aware, it has not been proven that people with all types of chronic pain will be able to get back to their previous level of activity if they do it gradually. I’ve really tried, both with sudden increases in activity and the opposite, gradually increasing walking time by just one minute per month. In neither case did my pain levels decrease and in neither case was I able to keep up the increase, as the increased pain interfered too much with my sleep. I recognise that many people may find that doing more activity builds muscle and enables them to do more with less pain: but it can’t be the case for absolutely everyone.

For me and for many others, limiting movement is about keeping pain levels bearable and being able to work, sleep and enjoy life as much as possible. It’s not always about fear or a poor understanding of pain, or even poor motivation levels. It is a way of coping and it is a pain management system. It might be the best option for some of us, and though exercise-loving physios may struggle to understand, life’s not all about physical activity. Since developing chronic pain, I’ve really enjoyed doing more art, writing, reading and listening to the radio. I do what exercise I can each day, ideally a short walk in my area looking at the nice gardens and the wonderful lake, and sometimes chores and a few all-body exercises. Chronic pain sometimes requires adaptation and change, and perhaps medical professionals should take the time to delve a little deeper into why a patient is avoiding some things, what could help them to do it again, and whether they have found any alternatives.

How to prepare for a physiotherapy (or hydrotherapy) appointment

Guest post

This article is specifically for those with chronic pain (of any type but especially from joint hypermobility syndrome/Ehlers-Danlos type III). While some people find that physiotherapy goes smoothly, others (especially with EDS) can find it very problematic. This post aims to help eliminate some of the problems that might occur by proposing novel ideas on preparing for your physio appointments.

Clarify the aims

Ask what the point of things are. Is this a test of your muscle strength? Are they checking if you’ve torn anything? How will the exercises they’ve suggested help you? Do they think your pain levels will decrease as a result of the exercises? After months and months of physio, with no results, I felt very in the dark about what it had all been about.

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Practice saying ‘no’ (politely)

Going to your first physiotherapy session can be much like P.E. at school. Someone is telling to do various movements, and this might not have happened since those days of smelly changing rooms and uncomfortable P.E. kits. It can be hard to realise this key fact: YOU ARE NOW AN ADULT AND THE PHYSIO IS NOT YOUR P.E. TEACHER. You might think this is obvious, but, trust me, it is so easy to feel you have to do whatever they say. I know I did, for several years, and deeply regret it! The truth is, you know your body and your pain levels much better than they do. If you know they are asking you to do something that will leave you in agony for the rest of the day, say ‘no’. If you know you’ve reached your limits, but they want you to do more, say ‘no’. Don’t just do it and then go home and repeatedly beat yourself up or mutter obscenities about the physio. Go and get some assertiveness self-help books if need be.

You can say things like:

‘I’d rather do that exercise later, when I’ve had chance to recover from this appointment.’

‘I’m not keen on doing that, as it will cause me a lot of pain. Is there an alternative?’

‘I’d like to stop now as I think I’ve reached my limit. Perhaps you can show me the other exercises at my next appointment.’

‘Please can we move more gradually? I’m experiencing very high pain levels already.’

And if you find yourself mutely obeying and regretting it later: don’t beat yourself up. I did it for years. I still am: it’s just so easily done.

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Learn about pacing, and be prepared to mention it

Pacing, in this context, is about moving gradually, and avoiding ‘boom and bust’, which is when you do too much, have to rest, then feel better and do too much again, in an endless cycle. Physiotherapy can perpetuate this cycle, if you’re regularly asked to do too much. The physiotherapist should only be asking you to increase activity/exercises very gradually. If that’s not the case, you may wish to ask if they can go more slowly, as you feel your pain levels are getting out of control.

Don’t prioritise physio exercises over your actual life

By this, I mean if doing the physio exercises is leaving you in too much pain to cook, clean, see your friends, or work, there is a problem. You are doing too much, and it’s going to make you depressed and/or frustrated with life. Tell the physio what is going on. Tell them that you aren’t willing to sacrifice your life to do their exercises. Discuss with the physio whether some everyday activities can stand in for certain exercises.

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Don’t allow your pain levels to become severe

If your pain levels feel too high, tell the physio. Give them a pain score out of ten relating to the exercises they are asking you to do. They’re probably not going to ask you about your pain levels, and they can’t read your mind. I once had a physio who kept pushing me to do more and more. I felt she was dissatisfied with my progress, and told her my pain levels were at 9/10 all the time so I really was trying. She seemed quite surprised, and sympathetic, and enquired about my pain medication. You might need to see your GP about exploring new methods of pain relief, if you haven’t already. Physio is meant to improve your life: it’s not an endurance test.

Evaluate the process and use your judgment

If you feel something isn’t working, say so. Consider cutting it out. For me, hamstring stretches often caused pain which would last for the whole day. I wasn’t feeling any benefit from them. I cut it out, and never looked back.

You might even find that physiotherapy as a whole isn’t helping. If you get to the point where it seems pointless, perhaps having seen a few different physios over a few months, be prepared to stop going. Physiotherapy doesn’t help everyone.

Do, however, maintain as much activity as you can, which is very important if you have JHS/EDS III. Even a month of less activity can lead to increased pain and disability in the long run: something I experienced the hard way. Set yourself goals for each day so that you maintain (or, if possible, improve) your strength and fitness. On your last physio session, ask for exercises to tone pain-free parts of your body, if appropriate.

Or if you feel you’ve got the picture and can continue gradually increasing the physio exercises by yourself, discuss it with the physio. They might agree you can just continue on your own, saving you from attending further sessions, which can often be quite a big hassle for someone with JHS.

Category: physiotherapy