Friendship is undervalued

We are obsessed with romantic relationships

As a society, we seem to be obsessed with romance. The majority of songs seem to be about romantic relationships or sex. A whole genre of books, Chick Lit, is devoted to romance, and romance often features as a life-enhancing situation in many other novels. And then there’s the Romcoms. Dating sites abound. And if all that weren’t enough, there’s that much-dreaded day for many singletons: Valentine’s day. No friends’ day, at least not here in the UK.

Where’s the celebration of friendship?

Where are all the homages to friendship? There’s a saying that lovers come and go, while friends remain, but there’s really little celebration of friendship in popular media. Everyone knows that friends are the ones you go when you have a broken heart; no matter how sure you are that your relationship will last forever, 42% of marriages end in divorce [1]. Who will be there for you then? Unless you’ve made the effort to nourish friendships even while juggling work and family responsibilities, the answer could be that no-one will. Even for those fortunate couples whose relationship remains strong, one day one of them will die and the other will be in certain need of supportive friends. I remember being very struck by that common regret of the dying (observed by a palliative nurse): I wish I had stayed in touch with my friends [2].

tom-pumford-wedding-photo
There is a great deal of celebration of romantic love, but when do we celebrate friendship? I’d love to see more books, songs and films about friendship. Photo by Tom Pumford on Unsplash.

 

The best friendships are not based on selfishness

And I don’t think we should just stay in touch with our friends for selfish reasons alone. Friendship should be about a mutual bond and the willingness to go out of our way to support the other person when they need it. I worry that we are coming to view friendship in quite a selfish light; many popular internet memes encourage us to ditch our ‘negative friends’. And yet, approximately one in four of us will experience a mental health problem at some point in our lives [3]. Are we expected to be constantly positive, encouraging and in agreement with our friends? Surely the occasional argument, or grumpy mood, or patch of depression is natural and part of being a good friend is to be able to resolve conflicts, not over-react to less-than-perfect behaviour and to support our friend through a difficult time. (That said, it’s another matter if your friend is routinely putting you down or acting aggressively etc. I would not suggest anyone risk their own mental or physical health for the sake of a friendship.)

Loneliness is rife

I often come across people online who have no friends, and indeed felt like I had none at various points in my life. Some might say that these are difficult or selfish people, but I think that’s unlikely. Many are people who come across great online. Many attribute the ‘disappearance’ of their friends to a decline in health, which they assume made their friends feel uncomfortable or view them as too inconvenient. Others have moved away from their university friends and are finding it impossible to make friends in their new town, and yet others attribute their lack of friends to a disability or depression. The emergence of friend-making sites such as Girlfriend Social and Together Friends is a response to the large numbers of people struggling to make new friends.

nick-abrams-couple-and-lone-man-at-sunset
Photo by Nick Abrams on Unsplash.

Perhaps we should not be so quick to write off old friends

I admit I now regret writing off a couple of former friendships. I’m quite slow to do… I generally cherish every friendship and don’t turn anyone away. But after two of my best friends said hurtful things, I considered our friendships over, and wonder now if I was a little hasty to do so. I’m sure I’ve also been a bit neglectful of some friendships during very busy patches of my life. I’ve also been on the receiving end of friendship neglect, and I find it very sad that people I’d gone out of my way to support in difficult times don’t value our friendship enough to maintain contact.

Friendship is a great gift, and need not be a burden

I have always thought that the gift of friendship is an easy one to bestow. A kind word and a bit of genuine listening costs nothing and need to take up much time. Grabbing lunch with someone, or dropping someone a text or email is not a momentous task, but can do a great deal to relieve someone of loneliness, provide sympathy or advice, and make them feel cared for. I think often it’s a matter of finding what works for both people, be it periodic phone calls, Whatsapp messages, Facebook etc. Even parents busy with young children can find a way to check in with old friends from time to time. When you look out for people in this way, not only do you store up people who will support you when you need it, you also help reduce mental health problems and even suicide.

kevin-gent-young-male-friends-bonding
Supportive friendships are a precious thing. Photo by Kevin Gent on Unsplash.

I think parents should also not assume that friends will want to see them without their kids or partners. Often friends will accept that it’s not easy for them to continue as they did before marriage and parenthood, and will be ready to accept – or even appreciate – different types of get-togethers.

And how about some more books, music and films celebrating great friendships? Heroic, impressive, beautiful friendships. I don’t know about you, but I’m quite bored of it all being about romance.

What do you think? Is friendship undervalued? What have your experiences of friendship been? How do you stay in touch with friends? Comment below!

References

[1] http://www.telegraph.co.uk/news/uknews/12011714/Divorce-rate-at-lowest-level-in-40-years-after-cohabitation-revolution.html

[2] https://www.theguardian.com/lifeandstyle/2012/feb/01/top-five-regrets-of-the-dying

[3] http://www.bbc.co.uk/news/uk-35322354

Related links:

https://well.blogs.nytimes.com/2010/08/16/when-friends-disappear-during-a-health-crisis/comment-page-2/?_r=0

http://princessinthetower.org/how-chronic-pain-affects-your-friendships-and-what-to-do-about-it/

http://www.tesh.com/articles/why-is-friendship-so-undervalued/

http://www.therisingblog.com/blog/2016/6/10/why-dont-i-have-friends-anymore

https://lifeinprogress290296.wordpress.com/2017/02/07/loneliness-knows-me-by-name

 

 

 

We need to learn to manage ‘choice overwhelm’

This is something that’s really been on my mind lately. Having many choices is very much a double-edged sword. On the one hand, it’s good to have options, but, on the other hand, it’s easy to become overwhelmed and over-stretched, never feeling like you have enough time for anything. I think some people are more prone to this than others.

It is often assumed that a benefit of the free market is having lots of choice. I’m sure it’s better than having no choice, but at times I do wish there was a bit less choice. I’ve often spent hours trying to find the best price or the best product, and it was tedious and exhausting. I felt, somehow, obliged to do it. If you enjoy shopping around, or, alternatively, don’t feel obliged to do it, I envy you!

A writer in the Economist seems to agree with me, saying “The explosion of available goods has only made time feel more crunched”. [1]

A gender thing?

Women seem to be more prone to this than men, as we find ourselves traipsing round all the shops to be sure we’re getting the absolute best deal on something, whereas men seem to find it a lot easier to just buy the first suitable item. I remember a journalist once saying the same difference applies to holiday booking. Of course, browsing and getting the best deal can be really enjoyable, if you like that kind of thing… But, if you don’t, how do you drop the habit?

Never enough time, and FOMO

And it’s not just shopping that can be plagued by choice overload. Our leisure time can often feel fraught as we struggle to juggle invites, events we want to attend, chores that need doing and hobbies we’re struggling to keep up with, not to mention exercise and spending time with friends and family. When did having lots of wonderful options turn into feeling like we never have enough time and always feeling like we’re missing out?

child-in-maze

The vast, messy, ever-present internet

Obviously, the internet has a lot to do with choice overload. It offers almost infinite resources including blogs, vlogs, Facebook, Twitter, Instagram, Snapchat and news websites. I was wondering the other day whether teenagers are allowed to have their phones at school lunchtimes. Our hour-long lunchtimes seemed to last forever and were usually very boring; I feel like I could’ve had a better time online. Most often though, I reminisce about an era when people didn’t check their phones during our lunch date, an era when I seemed to spend a great deal of time enjoying the outdoors… It comes as no surprise that 60% (or more) of British 16−24-year-olds visit a social media site several times a day. [2] Ultimately, I think the internet is a good thing, but how can someone who used to read magazines from cover to cover get the most out of a great resource without feeling overwhelmed?

Netflix and such

The same issue can arise with things like Netflix: in the olden days, we had a choice of 4 channels and recording something to watch later was a bit of a pain. You went to a shop to hire videos. Now, we are faced with a huge choice of material, on demand. But we simply don’t have time to watch it all so, how to choose?

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Thanks to the internet, our leisure options now look a bit like this. (Photo of 7 doors from Pixabay)

The pain of prioritising

The obvious answer to the ‘too much choice’ problem is clear: prioritise. For years I somehow didn’t realise this was necessary, accepting invites in a first-come-first-served manner, planning my life with a scattergun approach, lacking any ‘white space’ to reflect on life or make decisions. At one point, I actually had to pencil in my diary a slot to make a decision on some big issue, because otherwise the time didn’t arise! Looking back on that time, I’m so glad that my life is now so much more spacious.

Prioritising has a big place in my life now: in my work and professional development, in my personal admin time and in my leisure time. I’m the kind of person who finds many things interesting, so prioritising is, frankly, often quite painful, especially when it means saying ‘no’ to something. Ultimately though, time is finite and I don’t want to be one of those people who is completely over-stretched, never really listening to anyone or having time to reflect on their relationships and lifestyle. So, I’ve chosen my key hobbies (three of them), I’ve narrowed down my areas of work, and I prioritise friends based on how much they seem to care about our friendship.

Other strategies to manage choice overload and overwhelm

I’m thinking aloud here. Feel free to help me in the comments section below! This is very much a work in progress for me.

  • Think about how you fill your time. Rank the activities, from ‘favourite’ to ‘not that keen on’. Can you cut anything out? I realised I don’t really enjoy eating out: now I only do it for special occasions like birthdays or when a friend suggests it. Can you increase your favourite things? Maybe you just need to suggest them more, and people will be as keen as you are.
  • Narrow down the apps and social media. Do you really need to be on them all? Decide which ones are of most benefit to you and your network, and bin off the rest.

daria-nepriakhina-unsplash-woman-looking-at-phone

One study shows that young adults use their smartphones roughly twice as much as they estimate that they do (an average of five hours a day). [3] Photo by Daria Nepriakhina (Unsplash)

  • See the bigger picture: It’s not all about you. When you prioritise, factor in the feelings of relevant people. And give yourself enough time to help a stranger on your way somewhere, or do something for a friend at the weekend. Life isn’t a hedonistic pleasure spree, even if advertisers want us to think it is.
  • Narrow down your hobbies to the two or three most important ones. Combine them with socialising if appropriate e.g. in art clubs, book groups, dance groups, Meetups etc.
  • Learn mindfulness and slow down. Give up the frantic pace and really get the most out of what you’re doing right now.
  • Accept that life is full of obstacles and other people’s inefficiencies. Sometimes there’s nothing you can do, so take a deep breath and let go. Don’t resent the ‘wasted time’ − it would only make you angry.
  • At the risk of losing email subscribers to this blog, I’m still going to say it: subscribe to only a select few things. 
  • Set limits: decide in advance how long you’ll spend looking for the best deals (or whatever it is you’re doing), or limit yourself to looking only at a certain number of websites, for example.
  • Whatever you do, don’t get emails and Facebook notifications popping up on your laptop or phone screen!
  • In your free time, try thinking ‘what do I actually feel like doing now?’ Learn to go with your instincts instead of following a habit to go on Netflix, Facebook or whatever. Maybe you’ll actually feel more like going for a walk, painting, calling a friend, baking a cake…. Don’t know about you, but too much time online makes me feel bug-eyed, zoned out and drained.
  • Keep some white space in your diary. 
  • Look for recommendations g. try the Good Garage guide if you need to choose a local garage and consider subscribing to Which?

Share your ideas and reflections below!

Related links:

http://liveyourlegend.net/the-art-of-slowing-down-12-simple-ways/

https://www.psychologytoday.com/blog/turning-straw-gold/201109/4-tips-slowing-down-reduce-stress

http://bemorewithless.com/artofslow/

https://wordpress.com/read/blogs/105969207/posts/274 When choices become clutter

 

References:

[1] http://www.economist.com/news/christmas-specials/21636612-time-poverty-problem-partly-perception-and-partly-distribution-why

[2] 2014/15 Department for Culture, Media and Sport https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/476095/Taking_Part_201415_Focus_on_Free_time_activities.pdf

[3] http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0139004

 

 

 

Why the arts might save your life

It’s easy to dismiss these things as fairly trivial, but are they?

Sometimes when I think about low pay in the arts, I think ‘well, I guess it’s not as important as medical services, or food or electricity provision. You can go without the arts’. But can you? Does anyone? Most people watch films and listen to music, even if reading fiction, going to galleries and attending an opera are more niche. Millions watch TV talent shows. It’s easy to dismiss these things as fairly trivial, but are they?

Have you ever been feeling really sad or worried and turned to your favourite film, book or comedian to help you through? I know I have. According to the stats, 1 in 4 people will experience some sort of mental health problem in the course of a year. [1]. And while drugs and/or therapy might be a big help, I think the arts are a lifeline we often don’t recognise until the time comes.

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Most of us turn to TV and film when we need a distraction. Photo by Jens Kreuter on Unsplash

As a young adult, I remember thinking that, if it weren’t for music, and especially for British rock band, Feeder, I might not still be around. Music has always been massively important to me. No matter how you’re feeling, there’s bound to be a band that can sum up that feeling in a song, even if the song lyrics don’t really match your situation. And for those who prefer to listen to something jolly to cheer themselves up, there’s plenty of jolly music going around.

A photo by Daniel Ebersole. unsplash.com/photos/Q14J2k8VE3U
Music can be a lifeline. Photo of a concert by Daniel Erbersole on Unsplash

And the value of music isn’t just anecdotal. Studies in hospital settings have shown that listening to music reduces anxiety and depression, as well as having positive effects on blood pressure and heart rate. [2]

Of course, it’s not just music that can help people through a rough patch. I had to stop drinking several years ago for a medical reason. At times when in the past getting pissed might have seemed the answer, I now go to the library and get a shitload of books. It’s not glamorous, it’s not massively cool, but it works. Get lost in a book and you’re oblivious to your problems. Not only that, but some books are really uplifting in one way or another, so that by the end you do feel a bit better as well.

What’s your go-to art form? Love musicals or dance shows? Theatre, film, comedy? What helps you feel better? Has anything helped you through dark times?

A photo by hieu le. unsplash.com/photos/SrkuyPb3aUk
Reading is my therapy of choice. Photo by Hieu Li on Unsplash

And then there’s actually getting involved in art; the therapeutic value of this is a little better known. Does painting cheer you up? Playing an instrument? Writing? I should admit right now that I’m partly writing this to escape from the bloody awful week I’m having right now. But I hope you enjoyed it! Let me know your thoughts below 🙂

Related links:

https://wordpress.com/read/blogs/59686568/posts/51

https://wordpress.com/read/blogs/120981412/posts/339

https://wordpress.com/read/blogs/116154522/posts/22

Therapeutic usefulness of music and music-making:

http://neuroarts.org/pdf/arts_in_psychother.pdf

References

[1] http://www.mentalhealth.org.uk/help-information/mental-health-statistics/

[2] Arts and Music in Healthcare: An overview of the medical literature: 2004-2011, Rosalia Staricoff and Stephen Clift.

 

 

 

Why we’ve got to stop pretending disability doesn’t exist

Britain is a nation that prefers to ignore what it doesn’t like. And it doesn’t like disability.

Britain is a nation that prefers to ignore what it doesn’t like. And it doesn’t like disability. We live in a society where people believe a number of erroneous things, on one level or another.

We believe we’ll never be disabled

First of all, we all think we won’t become disabled. I know I did. For a start, young people are known to believe they are invincible. And we think we’ll never be the 0.1% or the 1% or even the 10%: it’ll be someone else. We don’t, in general, make any kind of preparation, such as taking out income protection insurance, which provides you with a monthly income if you become too ill to work and your sick pay runs out. I’d never heard of this until recently, and once you have a condition of some severity, forget it, they’re not insuring you.

We also don’t really care about how rubbish government disability provision is. When I say ‘we’, I mean most people who haven’t had much contact with disability. If we did care, there’d be more fuss about how little the government provides, how difficult it is to access any provision, and how humiliating the process can be. There’d be more fuss about how the many of disabled people live in poverty [1], and how difficult it is to access the workplace, and how rubbish public transport can be. And so on.

There’s also a pervasive view that medicine can fix almost anything. People frequently seem surprised that doctors weren’t able to resolve my health problems.

We believe disabled people deserve lesser treatment

A wild claim? Is it really though? I think secretly a lot of people think that disability is often someone’s fault. Some of a hippy inclination think it’s all a matter of mindset. Others think a good diet (whatever their definition of that is) will solve everything. Others may even blame parents for bringing a disabled child into the world. And even those who think none of these things may think disabled people shouldn’t have access to affordable transport options and carers, at the taxpayers expense.

Having become a disabled person in my 20s, it sometimes amazes me how little people are sometimes prepared to do to adapt. For example, my local Abel and Cole delivery man was visibly not at all keen on taking the boxes of food to the kitchen, even though it only took up a minute of this time: maybe less. One day he just didn’t knock and left it all outside, despite knowing I’m disabled. I’m not alone in this: in one poll, 28% of respondents, all of whom were disabled, had experienced people refusing to make adjustments [2].

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Is it too much to ask for my ‘vegman’ to bring the box in my kitchen? Image by Marcus Spiska. Sourced from Unsplash.

The world often feels pretty unfriendly to disabled people. So many things could easily be adapted to our needs, but aren’t.

We see disability as black and white

People generally accept that someone who can’t walk at all is disabled. But shades of grey confuse them. Almost half of disabled people taking part in a poll said they had talked to someone who didn’t believe they were disabled [3]. A friend once told me that if people saw me getting out of my wheelchair and walking (which I frequently do) they’d think I was ‘an actress’. No doubt some think I’m some kind of benefit fraudster, so beloved is this conception (largely a myth: there are hardly any) [4]. Fact is, I can only walk 15-25 minutes a day without getting so much pain later that I can’t sleep. You can’t get far with 15 minutes, or indeed 25, so sometimes I use a wheelchair or mobility scooter. But the fact that when I walk, I do so completely normally really fries people’s minds. As someone once said to me, ‘It’s hard to believe you need a wheelchair when you get out and walk normally’.

Invisible illness is, in general, difficult for people to take in. This is compounded by our obsession with ‘fakers’. From teachers at school to bosses at work, anyone and everyone is liable to being labelled a faker when they take a sick day. Yes, people do fake sick days. But when you haven’t been faking, and you get treated like you have, it really sucks. You are expected to look and sound awful to ‘prove’ your illness.

I often hear the same sort of problem arising with people whose disability involves exhaustion. People see them weeding their garden and think they’ve recovered.

These perceptions raise dilemmas for the disabled person. I often wonder if I should try to look like I’m having more difficulty walking. I know someone who can only speak a short time before pain sets in. She sometimes doesn’t speak at all, using technology instead, rather than speak a little and then use the app, because people are less confused that way. One disabled person jokes about shouting ‘it’s a miracle!’ when she gets out of her wheelchair to get into her car, again highlighting how strange people tend to find intermittent wheelchair use [4].

Those with M.E. often seem to have the most problems with black-and-white thinking, as some can have patches where they’re fine, then be really ill for a while, and people sometimes think things like ‘well, if you just rest up before our dinner date, you won’t need to cancel’, which might not be the case.

wheelchair-and-feet-pixabay
The general public is not yet used to seeing a wheelchair user get up and walk. Image sourced from Pixabay.

We think it’s ok to phase out the disabled people in our lives

Since becoming part of online support groups for the chronically ill, I’ve discovered that chronic ill health is very often accompanied by isolation. We often see on social media ‘inspirational quotes’ like ‘cut out the negative people in your life; find those who energise and inspire you’. I fully understand cutting out an abusive, unsupportive friend, but these days many people will happily leave by the wayside anyone who’s inconvenient to meet up with or anyone who’s feeling depressed. Even an otherwise wonderful guy I dated at uni didn’t want to hang out with the disabled guy on his course. I’ve heard many a story from the chronically ill of friends just ‘disappearing’, stories that have brought tears to my eyes.

Why do people do it? Surely it must link in with what I said earlier about how we believe it will never be us in that position, and how we believe, perhaps only on a subconscious level, that it is somehow their fault. I am not completely immune to this myself, but I catch myself and think ‘come on, this is ridiculous!’

Many of the chronically ill suspect some friends disappeared because they are uncomfortable with the idea it could happen to them. I think this must happen, just as it does with elderly people. We want to be around happy, shiny people in a bright, perfect world, just like in the adverts. Many people will admit they fear death and so ‘just don’t think about it’, and I suspect much the same attitude is taken to disability. It’s a bit like avoiding hospitals. This is backed up by research which has found that 26% of non-disabled people tend to think of disabled people with awkwardness and discomfort. [5]

The reality is uncomfortable, but we urgently need to face up to it so we can be there for our disabled relatives, friends, employees, colleagues and neighbours.

Learning to live with a physical or mental impediment is hard enough as it is.

 

unsplash-jules-fuchy-man-alone-dark-sky
Many disabled people find their friends ‘disappear’. Photo by Jules Furchy on Unsplash.

Related links:

UK government-commissioned surveys into attitudes to disabled people

https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/325989/ppdp.pdf

——

Articles on politicians ignoring disabled people:

http://www.huffingtonpost.com/sarah-blahovec/politicans-ignore-disability-and-its-a-big-problem_b_7784824.html

http://www.disabilityrightsuk.org/news/2013/october/govt-ignores-disabled-people-over-pip

http://theconversation.com/ignoring-disabled-people-and-carers-could-cost-parties-thousands-of-votes-40052

—–

Ignoring disability in international development plans:

https://www.theguardian.com/global-development/poverty-matters/2011/oct/13/development-ignores-disabled-people-poverty

https://oxfamblogs.org/fp2p/developments-cinderella-why-do-development-organisations-ignore-disabled-people/

—–

Ignoring abuse of disabled people:

https://www.theguardian.com/commentisfree/2015/nov/26/the-abuse-of-people-with-disability-is-a-national-shame-that-were-ignoring

http://www.bbc.co.uk/news/uk-wales-21674047

—-

Ignoring disability links with incarceration and the needs of disabled prisoners:

https://themighty.com/2016/09/we-cant-ignore-the-link-between-disability-and-mass-incarceration/

http://www.miamiherald.com/news/state/florida/article56734053.html

——–

Uk politicians: some raising disability issues, others ignoring them:

http://www.independent.co.uk/news/uk/politics/george-osborne-pip-cuts-disabled-disability-laughs-house-of-commons-john-mcdonnell-parliament-a6946176.html

———

On businesses ignoring disability:

http://www.huffingtonpost.co.uk/sophie-morgan/disabled-accessibility_b_6840528.html

https://crippledscholar.wordpress.com/2016/07/13/but-it-wasnt-designed-for-you-how-ignoring-accessibility-becomes-the-excuse-for-perpetuating-inaccessibility/

http://www.bighospitality.co.uk/Business/UK-businesses-lose-1.8bn-a-month-by-ignoring-the-needs-of-disabled-customers

References

[1] 30% of working age disabled people live in poverty according to Scope http://www.scope.org.uk/media/disability-facts-figures

[2] & [3] Polls commissioned by Scope and carried out by Opinium http://www.scope.org.uk/Scope/media/Images/Publication%20Directory/Current-attitudes-towards-disabled-people.pdf?ext=.pdf

[4] http://www.mumsnet.com/Talk/guest_posts/2292261-Guest-post-Invisible-illness-Im-fed-up-of-having-to-perform-my-disability

[5] http://www.scope.org.uk/media/disability-facts-figures

 

Chronic pain: an unrecognised taboo

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.

unsplash-jules-fuchy-man-alone-dark-sky
Living with chronic pain can be a lonely experience when it’s hard to talk about it.

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%) [1]. 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.

back-pain-pixabay
If chronic pain were visible, perhaps life would be easier for those living with it…

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 [2], 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.

hailey-keen-unsplash-woman-on-floor-in-agony
69% of those with the most severe pain experience anxiety and depression, which could be reduced if there were sympathetic listeners on hand!

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.

Related links:

http://sufferingthesilence.com/#sthash.QJKIOsPo.dpbs

http://blog.allsup.com/2014/09/nfmcpa-stigma-persists-for-people-with-fibromyalgia-chronic-pain-conditions/

http://www.dailymail.co.uk/femail/article-3204061/Young-people-invisible-chronic-illnesses-like-HIV-Lupus-reveal-conditions-world-new-portrait-series-prove-don-t-suffer-silence-shame.html

https://wordpress.com/read/blogs/120574110/posts/996 a personal description of the advantages of telling people about a health condition

https://wordpress.com/read/blogs/67332141/posts/796   on the stigma of autism

https://wordpress.com/read/blogs/116356880/posts/220  on the stigma of mental health issues

Scholarly articles/research related to this topic:

http://anthropology.mit.edu/sites/default/files/documents/jackson_Stigma.pdf

http://etd.lsu.edu/docs/available/etd-11182013-152753/unrestricted/rlang.pdf

http://www.ncbi.nlm.nih.gov/pubmed/24548852

Other references to chronic pain as a taboo:

http://mikscarlet.com/the-last-taboo-pain-why-does-it-hurt-us-to-admit-to-it/

http://leeockenden.com/specialties/chronic-pain/

http://www.canadianpaincoalition.ca/media/chronic_pain_final_2.pdf

If you would like to suggest a related link, email me!

References

[1] Prevalence of chronic pain in the UK: a systematic review and meta-analysis of population studies by A Fayaz, P Croft, R M Langford, L J Donaldson, G T Jones, http://bmjopen.bmj.com/content/6/6/e010364.full

[2] The Health and Social Care Information Centre, Sally Bridges, 2012 http://content.digital.nhs.uk/catalogue/PUB09300/HSE2011-Ch9-Chronic-Pain.pdf