Friends and chronic pain

I apologise if I’ve already talked about this, I’m currently on more than normal painkillers and my hands are too wrecked to search through old posts.

I got an email today which nearly made me cry, which could be the extra meds making me fragile…  it was 17 texts people with chronic pain would like to hear after cancelling plans.

I know I’m not the only person who really struggles between doing what their health needs and doing what they’ve planned and want to do. It also comes with a rubbish side of guilt at letting friends down and fear that you’ll weaken your relationship with them.

And there will be some people who won’t understand and who will slowly fade out of your life. I’ve seen this happen and have felt the pain of it first hand. It’s awful. It hurts. It shakes your understanding of relationships and makes you wonder what’s wrong with you. But, it is an excellent way of getting rid of people who aren’t really your friends anyway.

And there will be people who really step up, utterly surprise you and really deepen your friendship. These people are amazing. And they are the people you want in your life.

Regarding cancelled plans, the examples in the mighty article seem to fall into two categories; “no worries, I hope you’re OK, let me know if I can do anything” and “I’m coming round and looking after you by doing the laundry / taking the kids/just chilling out with you”. Both of these have their place. But I’d like to add a warning about the second one. Whilst it’s a lovely offer coming from a place of love, there will be times when it’s not useful. If I’m feeling really shit, I often just want to be left alone. So make sure there’s an easy way for someone to turn the offer down without adding to their guilt.

Cancelled plans is obviously just one additional consideration when being friends with someone who has chronic pain. Other things to consider are the types of plans, how your friend can get somewhere, tuning in to how they’re doing, the length of time you see them and many more. This will vary from person to person but for me, the following are incredibly helpful and thoughtful and make me feel less of a nuisance because of my pain.

Types of plans – I can’t do evenings any more. I’m asleep by 8pm. And I hurt more and am tireder and find everything much harder in the evening. I also struggle with meals out and even going out for coffee can be difficult. There are exceptions to this but on the whole, it is so much easier for someone to come to me and make themselves a coffee. It means i can sit in my comfy chair, I have no travel time, I have access to everything I need. And because there are no additional stresses, I can spend longer with my friends. That said, I do need advance notice so I can plan rest and recovery time. Don’t just drop in, and generally I can’t arrange to see friends on the day.

Travel – I’m currently housebound so that’s a huge thing I need my friends to factor in. If they can drive or push me somewhere then that might be an option. But the longer the travel time, the less time I can spend doing something. I need to make sure I have enough spoons to get home again.

Being aware of me – I have a few friends who I love because they notice when I’m flagging. I don’t want them to go but it’s for the best as my pain is rising and energy is falling. I can also tell them when I need to kick them out and they don’t make me feel bad for it. This also needs to be factored into more formal plans eg cinema and a meal would be too much for me, I could do one or the other. As much as is practical, I find seeing people little and often is much better for me.

Don’t rely on face to face – because I’m limited in the amount of time I can see my friends, I really appreciate it when they get in touch. It can be a hi how are you doing, a picture of a cat, or an I saw this and thought of you link. It doesn’t need to be much, just let me know you’re thinking about me. Chronic pain can get very lonely.

Saying all of that, I have a friend who’s wonderful and we do go out for day trips. The reason this works is because she drives, she pushes me around, she checks how I’m doing and is tuned into my pain and energy levels. We plan in advance and she checks when my evening carers are here so she can get me home in time to rest before they arrive. And we don’t have to talk constantly which I find exhausting. She also does little things like help me with my coat without me needing to ask.

It’s a whole other post which I think I’ve touched on before, but there are also Internet friends who can be amazing in very different ways.

Basically, if you have a friend with chronic pain, just take a moment to put yourself in their shoes and be a little more thoughtful.

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12 thoughts on “Friends and chronic pain”

    1. I think because we have to make so much more effort, we really are worth it. We’re basically saying, hey you’re awesome I want to spend time with you despite the barriers that make it difficult.

  1. I needed this today and was glad to find it in my inbox. I am struggling so much with friendships. Thank you for sharing your insight. The “texts” posts made me cry too, because most of my friends don’t say those things, and often don’t say anything at all. Feeling very down about it all. Thank you for writing about this. I feel less alone now. ❤

    1. It is such a difficult thing trying to manage relationships with chronic illness. You know what you want to do but the illness can really get in the way. I’ve found though that whilst I’ve lost friends as I’ve got worse, I’ve strengthened some friendships. And I’ve built a support network of friends through twitter who understand because they are in the same situation. It’s sad because we already have so much to deal with. But try to remember, their attitude and reaction to you, says things about them, not you. You can’t help your situation, they can help their reaction.

  2. Reblogged this on Hypermobility Syndrome India and commented:
    One of the major problems in my social life after I became significantly affected with chronic illness is often being unable to turn up for meet-ups, finding it difficult to be on time, and unable to make promises in general for any future plans.
    “17 texts people with chronic pain would like to hear after cancelling plans” was wonderful to read; although, due to my unusual sociogeographic circumstances, I have never had a single person say any of those things to me, ever.
    This post by hejyork is about friendships and chronic illness…

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