Something that happens when you have a chronic condition is that many people want to give you ideas on possible treatments: diets is a big favourite (paleo, vegan, raw, gluten-free etc), alternative/complimentary treatments is another (reiki, homeopathy etc) and then there are types of exercise (especially yoga) and general lifestyle things (from cocoa before bed to moving to another country). Sometimes it’s a tentative suggestion, sometimes full-on old-school Jehovah’s Witness zeal that’s hard to refuse. I know you mean well, but I’m still not going to try it, and here’s why:
I want to get better more than anything, but…
There is no scientific proof that the thing works
This is usually the case, otherwise I’d have tried it already. Yes, there probably are people on the internet who think it’s a miracle, but it’s going to take more than that. People often think we should try everything that might possibly work, but that’s when these factors come into play:
I don’t have time
This may seem strange but people without a chronic illness don’t realise how much time it takes up. There’s time spent in flare-up, when you can’t do anything much productive. There’s time buying equipment or pain relief and maintaining and replacing your special products. Time attending appointments and chasing them up. Time getting your prescription each month. Often pain or lack of energy just makes everything take longer. And we need days off too! There often just isn’t space for attending regular sessions of yoga/acupuncture/homeopathy/reiki, especially when there’s no convincing proof that it will help us.
‘Have you tried massage with a sweeetcorn-style roller?’ No – actually could be nice but I’m pretty sure it’s not going to cure me and so is not worth me investing time and money on.
I don’t have the emotional energy to try it
Trying potential treatments can be really draining. You get your hopes up, sometimes you invest a fair bit of time and money, then it doesn’t work and you feel really disappointed. Imagine riding that emotional rollercoaster ten, twenty, thirty times. On top of which are the difficulties that chronic illness can bring to relationships, friendships and work. I don’t want anyone to think I don’t care about cures, to think I’m enjoying my situation, but please understand I can’t try every suggestion!
Trying new treatments that don’t work is an emotionally exhausting rollercoaster. (Picture from Pixabay)
It’s too impractical
This is often the case with diets where you’re already on a very restricted diet (or even tube feeding) and for suggestions such as moving abroad or going abroad for treatment, or a treatment suggestion that you know will be extremely painful or exhausting for you, again without proven effects.
‘Have you tried the red corn, pumpkin and hemp diet?’ Ok, that’s not a thing, but most special diets are not suitable for me. (Photo from Unsplash)
I can’t afford it
I already spend a fair bit on medicinal products and equipment. When I went through a more hippy phase, I spent a fortune on herbs and tinctures as well as alternative treatments. The wallet can only take so much.
I’ve tried it already
And it didn’t work. Awkward, since you’ve just told me how wonderful it is. Now I feel like a failure.
‘You should do yoga!’ No thanks (made me worse), but I sure am feeling in a twist with all these inappropriate suggestions flying my way!
So should I just keep my suggestions to myself?
Unless I’ve expressed an interest in trying new treatments, and unless you’re my doctor, yes please. From what I gather, most of us with a chronic condition have the internet and have googled our condition or symptoms many a time. If we want to try a new treatment or diet and we have the time, money and emotional energy, we will.
I know people are being nice and trying to be helpful, but sometimes it can really take over conversations, which are already often about our health.
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It is possible to be house-bound, off work and really busy
I understand why people don’t expect these combinations. When you consistently see someone in bed listening to music, watching TV or dozing, it would naturally seem like they have free time.
But if you have Myalgic Encephalomyelitis/Encephalopathy or a similar chronic illness, especially if you’ve only recently contracted it or it has recently got much more severe, you may have amazing amounts to do but only have the energy to do things for, say, an hour a day, or even less time. It’s a bit like being in a prison where you have to spend 90% of your day in an empty cell, and you get a small window of time each day with a pen and paper. In a sense, 90% of your day is free, but you can’t actually do much with it. The prisoner potentially has more options than the M.E. patient, as at least you may be able to exercise, if the cell was big enough. Often, 90% of my day I’m physically and mentally exhausted, and the most I can do is listen to relaxing music with no words, rest in silence, or listen to something extremely low-key and repetitive such as First Dates.
Carers and friends often only see me resting. This is because it’s quite hard for me to do another task while they’re there as with friends obviously talking to them is the objective and it would be weird to do admin while they sit there, and with carers it can be difficult to do tasks while they are coming and going, asking me questions from time to time, and also I must admit I do sometimes think that I’ll look ‘too well’ if I’m sitting there filing or something while they’re doing my laundry, possibly wondering why I’m not doing it myself (with no knowledge of the spoon theory).
So yeah, it looks like I spend all day in bed or in my recliner doing nothing I suppose. When actually I’m recovering from doing a twenty minute or half hour slot doing urgent life admin. ‘Such as what?’ I hear you wonder. Here goes. It’s a long post… you’ll probably get bored before reaching the end but in this case that’s totally fine – I’ve made my point!
People often suggest things for me to do, not realising I have very little free time, or even say ‘you have a lot of free time, you could do a course/make art/think about working from home’. Resting time isn’t free time. It’s recharging. My brain and body have shut down and have a very limited capacity for action until I’m done with the rest. It’s actually really boring and frustrating for me to need to rest so much, but unavoidable (and yes, I am pacing and using resting ratios).
What resting looks like (free time to do online tasks or crafts) and feels like (recovering from complete exhaustion) are very different! (Images from Unsplash and Pixabay).
Resting looks to others like free time…
But feels like this (complete exhaustion, or essential recharging)
Disability forms and correspondence
In my first year of severe M.E. this took up a LOT of time. Given that my ability to do anything other than lie in bed was limited to some basic physio exercises, basic hygiene and food prep and about half an hour of life admin, this was slow progress. I didn’t count the hours but basically it took me over a year to apply for all three disability benefits – several months for each one. Given all the scary stories of people’s responses being twisted or misrepresented, I wanted what I put in writing to be very accurate and to clearly tick the right boxes by using the right language that they needed to assess me, which took research and reflection. It felt a bit like doing a dissertation, while all the time having the flu. There is also the process of obtaining evidence from medical professionals and carers and so on, which takes thought and time, and preparing for assessments, as well as chasing up the organisations if your case seems to have been put on a permanent back burner.
I have yet to discover how much admin is involved in being reviewed!
Buying, maintaining and replacing disability products
This takes up a lot of time. I have a wheelchair, which was tricky to get fixed. While not explicitly disability products, I rely heavily on having a working laptop and phone. I also have many other products [1] that are necessary or very useful to me. They quite often break or need replacing, and this can be especially time consuming when you’re housebound and not able to think clearly due to brain fog. I also have to shop for regular supplies of pain relief products such as Deep Heat, Ease Oil, Cura Heat patches, multivitamins and other non-prescription items (subscribe and save isn’t always a great time saver!).
I wish internet shopping and dealing with returns felt this fun! (Photo from Pixabay)
Making and changing appointments, ordering and sorting medication, trying new treatments, tracking symptoms
This is another big one for many of the chronically ill or disabled. Healthy people aren’t really aware of it. I would say this takes up about a day a week for me, plus filling in charts every evening so that I can track improvements or declines and try to figure out what caused them. For people who are very committed to trying many treatment options, including alternative ones, this can take up the whole week.
In the US, dealing with medical insurance also seems to be hugely time consuming for the sick. Thankfully, I don’t have that to deal with, though I did have to deal with a barrage of letters wrongfully accusing me of not being entitled to free prescriptions that I or my pharmacy had claimed, all of which had to be appealed separately. I call this ‘disability bureaucracy’!
Planning for carers, or doing household tasks
If you don’t have carers, doing routine household tasks can use up all of your available energy. By this I mean shopping, cooking, cleaning and laundry. If you have carers who do these, it takes up a bit less time but you still have to write the shopping lists, plan what to eat, and direct the carers to what tasks need doing, how to do them, and where everything is, which can actually be pretty time consuming. There’s things like getting a key safe as well and spare keys. Then there’s the time spent re-arranging when one is sick or needs to come at a different time and time dealing with any issues that might arise, such as misconduct.
Then there’s the admin of paying carers or cleaners.
Not sure what this guy’s problem is but I feel you dude. It sure can all get a bit much when you’re brain feels like a rock and your eyelids are drooping. (Picture by Prawny on Pixabay)
Recruitment of carers or care agencies, or cleaners
This can be a mammoth task. Unfortunately, carers and cleaners often feel like it’s a very low status job and are often keen to move on to another job (the low wages don’t help either). It can be really hard to find people you gel with and who are good at doing the job, and actually advertising and interviewing candidates can be very difficult when you’re very sleepy and your thinking is muddled by brain fog, not to mention that you’re exhausted by all the other tasks mentioned in this post.
Normal life admin
On average, some studies suggest people spend about four hours a week on ‘life admin’ [2] (or 109 tasks a year [3]) which includes paying bills, managing childcare, planning meals, making purchases and dealing with any problems with them, managing finances, getting haircuts, planning travel etc. Disabled and chronically ill people often have to do these things too, and if you can only manage half an hour of activity a day you’re going to get very behind, especially with the added disability admin on top. Planning travel or outings is something that sadly I rarely get round to, even when well enough to travel, because it’s the least urgent. It’s also more complex when you have mobility and energy restrictions, as you may need to book assistance or have a carer travel with you, find out distances of walking, whether there are lifts, etc.
Arranging household repairs takes up a lot of my time. Being in the house a lot, I really notice things, and also end up being the go-to person to be present when the plumber/engineer/builder comes round, and also the person chasing up such appointments.
The grocery shop used to take up an hour of about six hours or so of productive time in my day – since getting M.E. it requires two days to do it (shopping online for delivery), and nothing else gets done on those days.
Moving house
Moving house is a whole other nightmare for the chronically ill and disabled! Not only is there all the usual stuff, that’s really hard when you’re weak and exhausted and housebound, but also new places can give rise to new problems, exacerbating your condition in some way.
Car admin
If you have a car and are chronically ill or disabled, it can be both a blessing and a curse. A blessing because it may improve your mobility (or ability to park up in a scenic spot and have a nice rest there!) but a curse because it does need driving every 2-3 weeks to keep it in good health, and if you can’t do that it will need a load of repairs, new battery etc. Plus there’s the usual annual MOT, purchasing car insurance, car tax admin, service and getting petrol, just adding to the long to do lists of the already overburdened.
Cars can be a blessing and a curse when you’re ill. (Image by Ryan McGuire on Pixabay)
Health Research
Doctors don’t always know that much about all illnesses and conditions, or don’t concern themselves with the finer details, such as products that might help, non-prescription pain relief and dietary issues. Or you may be too ill to get out and see them (and them unwilling to come to you). So some time is required in looking into new and existing problems.
Awareness raising with friends, carers etc
I initially neglected this, but regrettably so. It’s really important to communicate to friends and family what is going on, why you aren’t seeing much of them, what’s happening to you, what you’re like when they see you and so on. And the same with carers. Unfortunately, with many conditions it’s quite difficult getting across your needs and showing that you’re not just being weird, difficult or lazy.
If you’re so busy, why spend time writing this post?
I do from time to time have a day off from admin, and I chose to use some of my time off getting this off my chest!
References and footnotes
[1] e.g. back supports, a mattress raiser, special insoles, light boxes, a recliner, special suitcases, special shoes, blackout curtains, physio equipment, special apps, eye masks and a host of other things
[2] The Art of Life Admin, Elizabeth Emens
[3] AAT (Association of Accounting Technicians), 2018
I often get “hits” on this site from people searching for information relating to Louise Hay. One of my most frequently viewed posts is about her claim that you can heal all diseases by using affirmations.
The post asks why Louise Hay — despite possessing a “miracle cure” for every known illness — chose surgery to get rid of a few wrinkles, instead of using her own teachings. If affirmations cured her cancer (where medical science failed), then surely her affirmations can also maintain the health of cells in the epidermis — far less complicated than altering the growth cycle of cancerous cells.
But it seems it’s only her customers who have the honor of testing out her miracle cures. And there’s no evidence that she even had cancer in the first place, let alone cure it.
Since I wrote that post, a slow but regular stream of Hay’s fans…
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!
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.
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:
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.
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?
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
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.
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.
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.
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!
This is you! Keep going 🙂 And don’t let anyone make you feel inadequate. Pixabay image.
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
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2. Just because something aggravates my pain that usually does not mean it is dangerous
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3. Sometimes it is a good idea to exercise even though it’s painful
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4. When people with pain gradually increase their level of activity, they often don’t experience increased pain
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5. Although my condition is painful, I would probably be healthier if I were more physically active
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6. Even though something is causing me a bit of pain, I don’t think it’s actually dangerous
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7. Some people with chronic pain find that exercise reduces their pain levels
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8. If I exercise less, I’ll get weaker and am then likely to experience more pain
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9. Worries about injury put me off exercising
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10. Pain always means I have injured my body
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11. Pain always means I have injured my body
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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
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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 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.
(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.
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.
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.
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.
Unconventional Wisdom 