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

 

Now could be the time to let go of gender assumptions

When was the last time you said “well, that’s men for you!” or “oh, you know, women!!!”? Or something like “well, it’s a girl/guy thing…” I’m guessing probably not that long ago. Me too! It’s actually really difficult to avoid, even if you want to. Why? Well, it’s great for bonding with fellow men or women. It’s also an easy way to explain a difference between you and your partner without getting personal (“oh, you know, it’s a guy thing I think.”). It’s also habit, and often used humorously (“honestly, men and their toys!” etc.).  Common gender assumptions include: men are stronger than women; women are more empathetic than men; men are better at maths and women are more interested in relationships than casual sex. Now, I’m not saying that none of these hold some truth, even a great deal of truth in the first case. But what I’ve been wondering more and more in recent years is:

Are gender assumptions serving us well?

I think my trigger for considering this was a guy I dated who constantly challenged any gender assumptions I made: both literally in conversation and simply by being who he was. Gradually, I began to realise how unhelpful some of my gender assumptions had been. The main negatives are:

Harm to the men and women who don’t fit the assumption

This is a major one I think. It’s hard to find a gender assumption that will be true in 100% of cases (I challenge you! Comment below if you think you have one!). And for those who don’t fit the assumption, it can be tough: for the women who are great at IT but have to battle to be taken seriously, for the men with lower sex drives than their wives, for the women with no urge to have kids and for the men who love knitting. Being seen as the odd-one-out can be crushing, leaving people feeling ashamed of who they are and unable to talk freely with others about how they truly feel for fear of seeming abnormal. This has been discussed in a sexual context in the guest post on libido, where the common (but wrong) assumption remains that men are all highly sexualised and certainly more so than their girlfriends or wives [1]. A similarly crushing (and very common) assumption is that women all get broody and men generally don’t.

And, as the current climate also demonstrates, life is particularly tough for women trying to prove themselves in male-dominated fields such as science, the film industry, politics and business leadership. At every step they come up against assumptions that they are less worthy than men to be there and thus have to fight twice as hard. And yet there is no evidence that these particular women are not every bit as good as the men they are competing with (and trying to be paid as much as) – indeed, they may even be better.

alex-bagirov-151675
It can be tough for women in male-dominated fields (such as engineering) when they constantly feel they have to prove themselves, due to the assumption that men are better at it.

Even if you believe that more men than women are better at maths, for example, that doesn’t mean that the female accountant doing your tax return is any less skilled than her male colleagues. And even if you believe that more women than men are interested in having children, that doesn’t mean that the woman you’re dating is necessarily going to be keen on the idea (nearly all of my boyfriends have assumed this and not thought to ask!). So, just how are those assumptions serving us when we can never know which men and women will actually fit with the assumption?

I guess at times gender assumptions can be helpful though. They might help English teachers pick a range of books that are likely to interest pupils of both genders more equally than if they’d given the matter no thought, for example. But for most of us, in everyday life, I don’t see that they’re very useful. 

Disagree? Comment below!

Perpetuating trends

Every time we make a comment in the form of a gender assumption, we contribute to its continuation. If you’re a man and you hear all the time that men enjoy porn, you’re likely to watch it and think you should enjoy it. If you’re a woman and you hear all the time that women are bad at parking, you may put down your errors to your gender instead of the potentially real cause of inexperience, lack of confidence or a stressful day. You may just let your husband park for you, whereas were the situation reversed, you can bet your bottom dollar your husband would be practising parking until he had it mastered! (Note to self: practice parallel parking!).

Self-confidence plays a large part in mastering most skills, and studies show that girls who were given (false) information about girls being less good at maths than boys actually performed less well in a maths test than the girls who hadn’t been shown that information! [2]

Pressure to conform stifles individuality and limits options

What most people want in life is to be accepted for who they truly are. What if we welcomed into our world, without even raising our eyebrows, the deeply empathetic men, the highly ambitious women, the men who love to sew, the women who love to code, the broody men, the sex-mad women, the boys who dress as princesses, the girls who love to play-fight, the men who aren’t strong, the women who are, the female welders, the male secretaries, the women with an interest in war memorabilia and the men who love romcoms… Just imagine how liberating life would be for all these people (and I guarantee they are out there!) if they didn’t have to worry about being judged or laughed at but instead if people just saw them and thought “well, everyone is different”. Because that, after all, is one undeniable fact.

girl in skate park
Imagine if we could all do and be what we wanted without gender assumptions getting in the way!

 

Without these assumptions, none of us would risk feeling like a cliché or a failed “gender rebel” either. It would be fine, as a woman, indeed a liberated, 21st-century woman, to be a stay-at-home mum, spending your free time making scented candles and having nights in with friends watching Dirty Dancing and drinking Prosecco, if you so wished.

Lately I’ve been trying to say what I like and don’t like, what I’m good at and not good at and what I want and don’t want from life, and not throw myself in with the vast group that is “women”. I’ve seen this trend growing in some of the podcasts I listen to as well, such as the Guilty Feminist podcast. To be honest, it feels much more truthful. Time and experience have revealed to me that women don’t all like the same books, films, clothes, partners and sexual practices. They aren’t all good at reading people or subtlety or being caring. They don’t all want children or rich husbands or non-stressful jobs. And men are equally diverse, even if they don’t necessarily reveal it to their male acquaintances. They don’t all like porn, action movies, fancy cars, no-fuss clothing and technology. They aren’t all good at parking, fixing things or being direct. And they don’t all want big houses, beautiful wives, lots of sex and a fridge full of beer (really!).

And if you go through life basing your decisions on these assumptions, you may well end up with pretty unhappy partners/children/employees/friends. Maybe now is the time to let go of our assumptions and just let people be who they are!

And you know what, we could all have more fun too. I’d like to know more about cars and football. Maybe if I did, I’d have new passions! Men also often tend to rule out a whole range of books and films that they might actually love. You could be missing out on discovering your ideal job because it’s not one you would feel respected, as a man/woman, doing. Why are we limiting ourselves in these ways?

fares-nimri-361821
Not ALL men want big houses, beautiful wives, lots of sex and a fridge full of beer! 

I’m really happy that I grew up in a household where it was ok to like toy cars as well as dolls, to play at being a firefighter as well as a mum and to choose to study whatever I wanted. I’ve felt gloriously free to bend gender norms by playing rugby and darts, wearing men’s clothes and aftershave (occasionally) and owning a toolbox, which I use from time to time (thanks mum!). I want everyone to feel this liberated!

I still don’t quite feel free of gender expectations when it comes to sex and relationships, and talking about them with other people, but I’m getting there. And I’m still catching myself bolstering gender assumptions I don’t even believe in for the sake of group bonding, not disagreeing with someone or making things seem less personal but my challenge for 2018 is to do this much less. Anyone care to join me?

Share your thoughts below!

References

[1] e.g. see http://www.huffingtonpost.co.uk/entry/sex-confessions-women-want-sex-more-than-men_n_3203879

and

http://www.huffingtonpost.co.uk/entry/women-want-sex-more-than-men-partners_n_3179516

[2] https://www.reuters.com/article/us-maths-girls/girls-do-badly-at-math-when-told-boys-better-study-idUSN2242207920070524

See also Related Links

Related Links

https://jezebel.com/5785910/the-damaging-expectation-of-higher-male-desire

The Guilty Feminist Podcast: Assumptions https://www.youtube.com/watch?v=ThjQ-sG3dlE

 

Be wary of being too nice

And no, I’m not going to argue that if you’re too nice, you’ll become a doormat. We’ve all heard that before, so it’s not unconventional wisdom. Going beyond the doormat argument, I’ve found several reasons why making a distinct effort to be a nicer person towards someone can have negative side effects:

Increased inequality

I decided a while back to be nicer to a housemate. She could be quite sensitive about comments to do with her house, so I decided to stop making any. Easier said than done, of course, as I was living with her and really could have done with a few adaptations here and there. But I made a huge effort and resisted mentioning all sorts of things. She, however, mentioned something about me and the house on an almost daily basis, from food in the plughole to forgetting to turn things off. If I hadn’t made my pledge, all would’ve been pretty equal but, as it was, I got sicker and sicker of receiving comments while having to hold all mine in. I’d end up blurting them out during a disagreement, which was hardly the best time. In future I’ll be entering into these kinds of resolutions with a heavy dose of caution!

Resentment

This goes hand in hand with increased inequality. It can easily arise when you’re making a big effort for someone but that person appears to be making zero effort towards you. Sometimes it can even be quite illogical. You can think: here I am, trying to think the best of this person, and yet they’re still mean to me. Well, maybe that person has no idea you’re trying to think the best of them. Resentment is such a difficult emotion to soothe away, I find. It’s hard to give freely and expect nothing (or worse than nothing) in return.

disgruntled-angel-child
Being too nice can encourage feelings of resentment if you’re efforts aren’t reciprocated.

Unpleasant surprises

There’s a practice in Buddhist-inspired mindfulness where you wish people well, starting with yourself, then a near-stranger, then someone ‘difficult’, then a larger group of people. An unexpected side-effect of this practice for me was forgetting about people’s darker sides. Let’s say my difficult person one day was a chap called Damien. I spend time thinking about what could have led to Damien’s unpleasant behaviour. I remind myself he’s a human being with hopes and fears like the rest of us. I wish him well. Then, later in the day, or even the next day, I meet Damien and he’s a complete arse towards me. I found myself feeling more shocked and more wounded by Damien’s behaviour as if, subconsciously, I’d expected him to be more likeable, more kind, simply as a result of my meditation.

I still do this meditation but with more awareness of what might happen.

Delusion

This links in with ‘unpleasant surprise’. It’s more of a deeper loss of awareness of people’s motives. It can be beneficial to think the best of people and not assume their motives are bad. They might not have called you for ages because of a rough patch at work. They might have been rude because they had a bad day. But if you take this too far, you risk slipping into delusion. I’ve observed it, and I’ve been there myself. For about a week I convinced myself that someone wasn’t being rude to me because of anything I’d done. Only when he stopped talking to me altogether did I get the message, when it was really too late. Kindness = good; naivete not so much.

man-looking-concerned
Sometimes people’s motives are bad and we need to be able to trust our gut and not give them the benefit of the doubt!

But don’t turn into ****head!

I’m not suggesting anyone stop trying to be nice to people. Even ‘difficult’ people. I just wanted to share some of the surprising after-effects of my attempts to be a nicer person. I’m not sure what the answers are here, but I feel like being aware of the issues is always a good first step! I guess my takeaway is to still try to be a nice person but:

  • still listen to my gut if someone is acting in a mean way, rather than assuming I’m reading too much into things or being too sensitive
  • not take this too far by doing too much for someone who’s not reciprocating or appreciating it
  • reminding myself that even if I’m thinking kindly of someone, they might not have a similar focus and may have no idea I’m doing it either!

Have you got any advice on avoiding these pitfalls, while still trying to be a better person? Or just got some tales of your own on the topic? If so, please share below! And if you want to be kept in the loop in case I find the perfect solution, or just to hear more of my ponderings in future, please subscribe.

edward-lear-mother-beating-children
Trying not to be too nice could be taken too far though… Image by Edward Lear.

 

 

Related links:

 

https://wordpress.com/read/blogs/97182472/posts/502 8 Signs you are way too nice

 

https://wordpress.com/read/blogs/113568713/posts/981 Being too nice and bullying

 

Business context: https://hbr.org/2014/04/the-problem-with-being-too-nice

 

Believing in the law of attraction isn’t helpful

This post is a kind of short follow-on from my first post on the law of attraction, which examines what it is and whether or not it is plausible. You can find that post here. This post addresses the argument that goes along the lines of “well, even if it’s not that scientifically plausible, isn’t it a good thing to believe in?”

Visualisation

Apparently “Creative visualization is a cornerstone of using the Law of Attraction” [1]. Psychologists seem to vary on whether visualisation boards are a good thing or not [2]. They are commonly suggested by self-help books and even at school or college courses though the Law of Attraction site goes further by suggesting spending 10-15 minutes on this every day. While it can be a good thing to visualise where you want to get to, most psychologists seem to suggest that you do need to then plan concrete steps to get you to your goal such as enrolling on courses, joining a dating site, money management etc. [3].

Affirmations: not always a good thing

Affirmations (another major part of the Law of attraction) can also be a double-edged sword, as research has shown that uttering affirmations that we don’t truly believe can actually reduce our self-esteem [4]. As an aside, I will add that personally I’m a fan of affirmations but it does make sense to stick to things that either are true or that we can easily believe are true.

kinga-cichewicz-despondent-woman
Using positive affirmations can actually worsen self-esteem, as can the belief that everything is within our control (when things don’t go as we wanted). Photo by Kinga Cichewicz on Unsplash.

Being in full control of life: a good thing?

The Law of attraction suggests that “your entire future is yours to create” [5] . Well, how lovely. But being told life is entirely in our control can be crushing if things go wrong and we feel that it is all our fault; and even minor failings to achieve our ‘dream life’ are likely to weigh on us if we feel everything is in our control, as Alain de Botton points out here [6].

And how realistic is it that everything is in our control? What about earthquakes and wars, trains going off the rails and terrorist attacks?

The law of attraction tells us “Be happy, for the universe is always on our side!” Maintaining law of attraction beliefs in the face of rape, loss of your home etc. is going to require quite some mental gymnastics. And is it going to encourage us to speak up in the face of injustice or to try to reduce famine, war and abuse? Probably not, if we think that these things are happening “for a reason” or because of people thinking negatively.

“Treat The Universe Like Your Personal Supermarket”

This is one of the principles stated on the law of attraction website. Hmm. Even if it were plausible that a somewhat demented Santa figure is in charge of granting our wishes if we order them correctly, how beneficial is such a belief? Isn’t it rather self-centred? And why hasn’t anyone wished for world peace? Numerous psychologists and philosophers have pointed out that actually we are often at our happiest when serving others and when we lose the heavy sense of our personal weighty existence, be it when ‘in flow’ during a hobby, immersed in a vast landscape, star-gazing or volunteering and immersed in helping others [7].

caleb-woods-father-christmas
While it may initially be appealing to imagine a Santa figure in control of the world, much of the law of attraction rhetoric is very self-centred, appealing to those who want to ‘order’ the ‘perfect job/partner/house’ etc. Photo by Caleb Woods on Unsplash.

What do you think? Comment below.

References

[1] http://www.thelawofattraction.com

[2] https://www.psychologytoday.com/blog/the-science-success/201107/how-positive-thinking-and-vision-boards-set-you-fail

https://www.psychologytoday.com/blog/the-psychology-dress/201111/visualize-it

https://www.psychologytoday.com/blog/the-blame-game/201205/throw-away-your-vision-board-0

[3] e.g. Oettingen and Mayer; J Pers & Soc Psych, 2002. and https://www.psychologytoday.com/blog/the-science-success/201107/how-positive-thinking-and-vision-boards-set-you-fail

[4] https://lifehacker.com/positive-self-affirmation-may-backfire-on-people-with-l-1593723648

[5] http://www.thelawofattraction.com/what-is-the-law-of-attraction

[6] https://www.youtube.com/watch?v=MtSE4rglxbY

[7] http://www.pursuit-of-happiness.org/science-of-happiness/getting-in-the-flow/; http://www.pursuit-of-happiness.org/science-of-happiness/caring/; http://www.bbc.co.uk/earth/story/20160420-how-nature-is-good-for-our-health-and-happiness; http://dilja.co.uk/the-benefits-of-feeling-small/ http://www.pursuit-of-happiness.org/science-of-happiness/strengths-and-virtues

 

 

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.

Related links:

 https://stickmancommunications.blogspot.co.uk/2017/01/hypermobility-reluctance-to-exercise.html