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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.
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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