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.
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!
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.
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.
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  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!).
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.
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’  (or 109 tasks a year ) 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 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.
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.
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
 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
 The Art of Life Admin, Elizabeth Emens
 AAT (Association of Accounting Technicians), 2018
A system that is designed to eliminate fraud but has unwanted effects
These days the conditions for getting disability benefits and a blue badge are so extreme that many people who are genuinely in need and should be eligible are finding it difficult to qualify. There have also been many instances of the assessors deliberately lying or trying to catch out participants . For me, hearing about this has definitely made me quite anxious about assessments, especially because I look fine. I can be totally exhausted and in extreme pain but I’m young and not naturally very expressive and you really can’t see it just by looking at me. You might see it if you know me and you’re looking with a sympathetic eye, but if you’re looking to fill quotas and save the government money, you could easily decide I look totally normal. Many people going through the process of applying for benefits are aware of the instances where assessors have disregarded what they have said instead commenting on how they looked and other superficial observations . Unfortunately for many young people with severe degrees of conditions such as ME/CFS, MS, EDS, Fibromyalgia and so on, they feel a pressure to demonstrate their disability by walking in more agonised way, turning up at the assessment in pyjamas, using a stick etc. Something the majority of people don’t know is that pain is often delayed, so even if someone isn’t looking agonised now, they may feel it later. I’ve noticed that there has been some adjustment to the application forms to cater a bit more for fluctuating conditions and invisible illness but there’s still some way to go. It’s unfortunate that the very honest people who don’t exaggerate their condition at the assessment are possibly more likely to lose out than the (rare) people who are actually fine and made the whole thing up, and who are probably seasoned actors. Every time I have an assessment (and there seem to be many! Plenty of bureaucracy for the sick!) I do feel a pressure to look ill and in pain (which I often am), but at the same time I worry they’ll see me at another moment looking well and think I’m faking the whole thing! It’s a minefield!
A topic that’s hard to discuss
Another reason I feel like people think I’m faking it is because I rarely talk about how my condition affects me. It’s quite hard to fit into conversation sometimes, people rarely ask and it’s inevitably awkward, as you feel like you’re fishing for sympathy, and sometimes you get pity, or, alternatively, disbelief, which can be quite depressing/upsetting. But I know I need to discuss it more, because it’s just not something people know about, and I’m doing all these ‘odd’ things like sometimes using a stick/wheelchair and other times looking like I walk fine.
I think this is also an area that can really confuse people. I’ve found myself thinking ‘so-and-so is always laughing so he can’t be depressed’, and I’m sure that’s not the right way to look at it! I also knew a guy who stayed up all night before his assessment so he’d look ‘more obviously depressed’ by being dishevelled.
What can we do about the situation?
If you have a hidden disability:
Try to talk about it more – it’s hard, but I know I need to do this
Share this post with people, or similar posts
Challenge any suspicions you may have about other people
If you don’t have one:
Challenge your suspicions and try not to be as judgmental as we are encouraged to be
If you find out someone you know has an invisible illness, say something like ‘I’m interested how the condition affects you, if you don’t mind sharing, so that way I can be more considerate about it’ – they’ll love you forever! And a lot more things will make sense. Do bear in mind they may only give you an edited version though, as actually detailing all the effects could take a long time for some people!
Feel free to ask questions such as ‘how does it feel when you walk too much?’ – but make sure your tone is not suspicious or judgmental! Most people with invisible illnesses feel very judged already.
Try not to expect people to look how they feel, and try not to assume it’s much worse to be physically unable to do something than to be able but only with significant negative effects.
Try to read some or all of the blog posts in your feed about invisible conditions so you learn more.
What are your thoughts and experiences on this topic? Comment below!
If you found this post interesting, you might also like other posts on disability issues:
On the whole, talking about the chronic pain I experience tends to be greeted with a resounding silence, and/or rapid change of the subject.
If you’d asked me ten years ago to name taboos in the UK, I’d have said things like ‘female masturbation’ and ‘being transgender’. Twenty years ago, I might have said ‘being homosexual’. Particularly in some circles, these things are still somewhat taboo, but much less than they were. Now I’d include chronic pain, but only because I live with it. If you don’t, you’re probably happily oblivious of the awkwardness around the topic.
The Cambridge UK dictionary defines ‘a taboo’ as ‘an action or word that is avoided for religious or social reasons’. Having suffered from chronic pain for several years now, I’ve only gradually become aware of how often I refrain from mentioning pain, and why. On the whole, talking about the chronic pain I experience tends to be greeted with a resounding silence, and/or rapid change of the subject. No doubt this is why I often avoid mentioning it, or mention it briefly and rapidly change the subject myself.
Why the awkwardness?
Are people awkward about chronic pain because they don’t know what to say, like when someone’s parent has died? Or is it because they think you shouldn’t mention it; you should be pretending everything is fine? Hard to know really. Here are my thoughts on possible reasons why people react strangely to talk of pain:
Chronic pain, like death, old age and hospitals, is something most people prefer to ignore until forced to confront it. Discussion of these topics causes a sense of unease that people want to avoid.
People want to ‘save’ those with chronic pain from talking about something that seems very personal, so strive to change the topic.
People are worried about either sounding pitying or heartless, so say nothing or change the subject.
Actually, people are only a little awkward but the chronic pain sufferer is expecting awkwardness and that magnifies it in his/her mind.
There’s always the worry that silence means something negative like ‘you need to man up’, especially after actually receiving some rude and inconsiderate comments along these lines in the past.
Then there are other reasons why people with chronic pain don’t talk about it:
Fear of sounding like you’re complaining and fishing for sympathy.
The complexity of the subject, which can only really be covered fully by a long conversation.
Fear of sounding ‘soft’.
This article sums up brilliantly the many reasons why revealing a chronic pain condition can make a person feel very vulnerable: it can feel like you are in a no-win situation. But the less you say (or are able to say, before the topic is changed!), the more likely people are to jump to the wrong conclusions. The more you can explain, the more people are likely to gain understanding.
Why we all need to help end this taboo
The trouble with any taboo is that it creates repression and shame. People feel abnormal and are unable to obtain the benefits of discussing something important to them, such as compassion, getting useful suggestions, and that feeling of carrying a lighter load. And the subject of the taboo remains poorly understood, shrouded by prejudices. Estimates of those living with chronic pain vary, but it is undoubtable that the percentage is high: about 7.9 million people in the UK experience moderately or severely limiting chronic pain (between 10.4% and 14.3%) . How many people do you know with chronic pain? Does it match these statistics? If it doesn’t, then maybe you know some people who are living in the silence of this taboo.
We Brits are well-known for a ‘grin and bear it’ attitude and for euphemisms. We say things like ‘things have been better’, when really we mean ‘things are terrible’. Is this helpful when it comes to chronic pain? Well, there’s certainly a need for much ‘patient endurance’, as chronic illness writer Toni Bernhard puts it. And sometimes we do smile, in spite of the pain, and we must. But we shouldn’t feel pressurised to pretend everything is fine if we feel unhappy. We shouldn’t feel unable to set boundaries, to pace ourselves, and to use mobility aids or other aids which ease our burden. Most importantly, we should feel ok about sharing this struggle, this massive part of who we are.
And with 69% of those with the severest level of pain experiencing anxiety or depression , improving the social conditions faced by these people should be a high priority. Feeling that pain is taboo isn’t going to lift anyone’s mood – quite the opposite.
How can we get there? If you live with chronic pain, try to start sharing when you can. And if you don’t live with chronic pain, be ready to listen, to show some sympathy, and to discuss this issue which has been pushed into the shadows for far too long.
I’ve started talking more about pain, talking about it whenever a good opportunity arises. I’ve started resisting the urge to not talk about it. And you know what? It feels good. It feels a bit revolutionary. It feels like being myself and like opening the door of understanding, even if merely by an inch.