Chronic pain and socialising: the things my friends and family don’t know

Socialising when you have chronic pain can be a bit of a struggle. Recently I’ve been to a work’s lunch ‘do’, spent time with my family, and to a wedding. It’s really got me thinking about the whats and whys of coping with my pain when with family and friends.

Chronic pain and socialising

Like I mentioned in a previous blog post why we must not let chronic pain stop us doing the things we enjoy, we must do things to make us happy, and socialising and spending time with friends and family is important.

Here are some of the things that I do or struggle with that aren’t always obvious to those around me.

I hide my pain

Whether people know I have chronic pain or not, I always tend to hide the fact that I am in pain or struggling. It’s part of our human nature not to want to show any weakness, and even more so when you’re in pain.

I have had my pain for over 5 years now and in the early days it was difficult to not show some kind of sign that I was in pain – a grimace on my face, fidgeting to get comfy, deeper breathing when I have a sudden agonising twinge – but now I’m more used to my pain and most of the time I can hide it. On really bad pain days though, I just stay at home in my safe environment where can just be myself and not have that added worry of what other people may be thinking.

I don’t know how to explain my pain

I don’t have a diagnosis for my pain so its’s even more difficult to explain what it is and what is causing it. I have chronic coccyx pain, but I don’t have a coccyx as I had it removed in February 2015. Because I don’t have a diagnosis, it’s easy to assume that people don’t believe me or that my pain is not justified enough. I often just say I have lower back pain, which a lot of people can relate to, but that never really emphasises how much pain I am. Nor does it feel like people understand how much pain I am. Most people brush it off as something that everyone has experienced and ‘get over it’ type of thing.

I avoid one pain but cause another

Several of my previous blog posts have been about my neck pain and how I’m having physio to try and make this better. My neck pain is caused by sitting abnormally, but even though I am consciously trying to sit normally, sometimes this can’t be avoided and I have to sit to avoid my coccyx pain. And when I do, my neck pain more often than not kicks in. So here lies another pain to try and explain; often I don’t bother.

My pain management is always harder

At home I can lie down in my pyjamas or joggers and get as comfy as possible; I can use my heat packs (I have 3 different ones); and I can have a good cry if I’m really struggling. These things can’t be done when socialising or out in public. Well, they could, but it would mean drawing unwanted attention to myself.

I don’t go out a lot these days as I tend to prefer cosy nights in, or spend time walking my dogs. But I do enjoy going out for dinner, especially trying new places and new food. I always have to think ahead and consider the seating to make sure it is suitable – hard chairs are a no no. Because my pain kicks in when I sit down, it’s so easy for people to tell me to stand up if I’m struggling. But how many people want to stand up while everyone is eating? It feels a bit awkward and is embarrassing. Apart from making a special trip to the toilet, or walk around aimlessly, then there isn’t much more I can do. At home, even if I had friends and family round, I can get up and walk around not giving two hoots what people think because it’s my safe space. And I can easily pop upstairs or walk about without thinking people are wondering what I’m doing.

I have some really supportive family and when my pain is bad I lie down on the sofa while one or two of them (depending how many of us are together at the time) have to sit on a dining chair. And my partner will always let me lie down on the sofa with my head or feet across on her lap to get comfy.

I don’t take many tablets for my pains, but my neck pain can sometimes ease a little if I take ibuprofen and paracetamol, and these can also get rid of headaches that are caused by my neck pain. I take these as discretely as possible to avoid drawing attention to myself so that I don’t get asked what’s wrong, or why am I taking tablets.

My anxiety makes things so much worse

I’m naturally a worrier, but my chronic pain has made my anxiety so much worse. Everything I’ve written above worries me when I have to go out. I always worry about how my pain impacts on others. This sounds silly, right? But how do others feel when I stand up when they’re all sitting down, are they embarrassed like me? How do my family feel when they are sat uncomfortably on a dining chair trying to relax in front of the tv? Do they resent the fact that I have my pain? What if my pain is so bad that I can’t hide it and I have no easy way to get back to my safe space?

I tend to always fear the worst as well. I think through different scenarios in my head and this makes me feel prepared. When the time comes and things don’t go as I’d feared, then that generally means it’s gone well. Again, silly right? I’m a planner and I like to feel prepared and organised to be able to face things, and more importantly, feel in control (read why this is in my post how my chronic pain has changed me).

I can often talk myself out of doing something that I’m worried about, and this instantly relaxes me. But opposite to this is the fact that I worry that I will miss out on things: I want to be the one who travels the world with my partner; I want to enjoy the fun night out with my friends; I want to go out for dinner at the fancy restaurant with hard seating. All this anxiety on top of trying to manage my pain is tough. As I mentioned in my last blog post, I am wanting to work on this over the next year.

Also, we never grow or develop unless we step out of our comfort zones. To try and tackle this, my January motto is ‘be a little braver’.

I have to choose practical and comfy over fashionable clothing

I spend 90% of my time in either joggers or pyjamas. I have to wear clothes that are comfortable and that do not cause pain – I can’t wear anything too tight or that doesn’t have much give in it. Finding clothes for a wedding was not easy but I managed to find some smart grey trousers that had the baggy look but were perfectly comfortable and smart at the same time. What might be an easy task for someone without pain, can cause a lot of overthinking, stress and worry for someone like me who does have chronic pain.

Despite all the above, it’s important to spend time with those close to us and have good times. A lot of the time I know I overthink things and I worry too much about what others are thinking. This is part of my personality but hopefully the work I do to handle my anxiety will help with this.

If you have chronic pain or a chronic illness, how do you cope with socialising? Do you have the same struggles as me?

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26 thoughts on “Chronic pain and socialising: the things my friends and family don’t know

    • Alice says:

      It’s good to know that it’s not just me, but I also don’t like to think of others struggling like this x

  1. Lyra says:

    Oh man, this 100%. I have always had chronic pain and structural issues. It can be such a struggle when folks don’t understand. 💜

  2. Rowena says:

    More hugs for you, Alice. One thing that helps me, is using a walking stick and I’ve said it before that anyone who is having a bad day, has a broken heart, should go out with a walking stick as it brings out the best in people. They know you’re struggling.
    MY issue is not so much with clothing but needing to wear sensible and safe shoes and these are expensive and seemingly designed for the elderly. Thought you might relate to a post I wrot yesterday about missing my high heels and needing to wear sensible shoes: https://beyondtheflow.wordpress.com/2018/02/17/finding-my-happy-feet/
    My husband is my pillar in social situations and the kids are learning as well. WE identify potential hazards and try to plan ahead. Trying not to have too much on at once is another strategy.
    I tell people I have a small petrol tank and run out of fuel quickly.
    Best wishes,
    Rowena

  3. Emmalene says:

    It’s almost unthinkable all the things you have to endure on top of dealing with your pain on a daily basis. It sounds like you have a great support network that you can rely on and that’s so important. My teenage best friend had a gaping wound from an op right above her backside so I used to carry a rubber ring around for her to sit on. I’d get the odd looks thrown at me and she could just deal with getting somewhere and sitting down without embarrassment. Big hugs to you (but careful ones!)

    • Alice says:

      Aww thank you. Support is key. And it makes the world of difference when people do the things like what you did for your best friend.

  4. Lauren says:

    I once wore a migraine strip on my forehead on the tube and train.. I actually didn’t notice too many funny looks but a few supportive and knowing smiles. Pain relief when you’re out and about can be hard, I’ve taken my wheat bag to work and to relatives house and wore a migraine strip at work actually. As you say, it can be difficult to get out and about while managing your pain but worth it if you can x

    • Alice says:

      I’ve not heard of migraine strips. I’ve also taken my wheat bag to work with me. It gave off a nice smell from the microwave 😄

  5. Debbie says:

    Thanks for sharing some of the issues you have to think about in order to get through social events. I had no idea of the variety of problems chronic pain could cause so I thank you for being so open and honest about it. I do hope you feel better in the near future too. Take care.

    • Alice says:

      Thanks Debbie. I’m so glad you found it a useful read 😃 It’s part of my blog’s mission to help non-chronic pain sufferers understand more – so your feedback is great, thank you!

  6. Gloria says:

    So many suffer in silence. I bet writing about everything on your blog helps too! Yes, it’s the socialising part that’s probably the most difficult.

    • Alice says:

      The writing certainly does help. I feel a bit vulnerable at times but the feedback I’m getting is encouraging me to keep writing – thank you!

  7. Claire Saul says:

    Ali,it has taken me all day to comment – because my pain has been off the scale! I’ve made the back of my leg bleed through rubbing at the nerve, my spinal cord stimulator isn’t covering it, and then my POTS caused me to pass out in the shower and hit my head….huge bruise, put neck out and headache. I so get everything that you have said…sometimes it is possible to push yourself to do things and other times it is just impossible. I worry about letting people down, I worry about being a nuisance, I worry about being “left behind” as other people’s lives move on. As you say the anxiety just increases the pain! Now I’m worrying because I have booked to attend the Bloggers Bash and my 30 year nursing reunion..the BB hubby is coming so will support me, but the reunion weekend in London may just be beyond me – and none of them have seen me in a wheelchair. They may be nurses but I don’t want the “girls” I trained with taking me to the loo!! OK enough info – I value the friendship of my online pals like you who “get it” so much!! hugs & love C xxx (currently sitting charging my spinal cord stimulator, with hot pads on my back & leg and a dislocated shoulder)

    • Alice says:

      Oh Claire you poor thing. What a rubbish day you’ve had. I’m so so sorry to hear how much pain you’re in. And I totally get the points you make about being left behind and letting people down. It’s hard. The main thing is we do what is right by us at the time. I’m so glad to have you as an online friend too. It’s so reassuring that others ‘get it’ but awful at the same time knowing that they suffer too. Take it easy. And please do get in touch anytime. Big hugs coming your way xx

  8. Angela Noel says:

    It goes without saying that I wish you weren’t in pain. I do have lower back pain and I do try and never bring it up unless I have to. There was a time in my life when I thought an injury or pain was something to talk about, to get sympathy for. But as I age (and hopefully) acquire wisdom, it seems talking about it in some situations doesn’t ease either the listeners anxiety or my own. Feeling limited in social interactions is a terrible side effect of pain. Though I have nothing even close to compare it to, I think being able to acknowledge that this is a side effect is important to removing stigma. Pain reduces our tolerance for the little injustices and inconveniences of life too. I’m less patient when I’m in pain, and that too can cause some social challenges with friends and family.
    Overall, I’m glad you’re talking about these issues in a way that others can relate to. While we may not ever fully understand, we can at least begin to.

    • Alice says:

      Thank you Angela. Your comment makes so much sense. And yes, pain makes me less patient too. Which can be hard for others to understand. I’m glad you like that I’m talking about this stuff. If it helps in some way then it’s all good.

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