Sorry to bother. I've been suffering from chronic pain for 15 years now. My wife whom I care for immensely tells me that I'm too critical of people in social situations and I'm not any good at them anymore.
And I don't really know what to do. People cannot understand my pain. And the words I would use to describe it would be too obscene. So all I can do is really listen to people talk and hope that they are entertaining enough to at least distract me from the pain. But that does not happen very often.
It's just lonely. I feel like no one can understand or speak to me on "my level." So I don't really enjoy being around people anymore.
Any advice?
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Resqc
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Hi there, I don't really have an 'answer' but I'm just writing to empathise. I'm the wife of a chronic pain sufferer and I've watched my once sociable, fun, lively husband go from being the life and soul of any social event to completely shutting down and having no real friends any more.
We no longer go out together or with friends and he only really ventures out if he has a work event he needs to attend. He has said similar things in that the pain is so all consuming that he feels he has nothing to offer and that he's not in the same space as other people.
I feel so sad for those of you suffering in this way - it's devastating for you, your families and your life. He's the head of a patient support group and is a strong advocate for medical cannabis here in the UK. It's not a cure, but it can help ease some of the worst effects of his chronic pain. Take a look at his site (needs updating): patient11.co.uk/
I'm sure if you reach out to him, he'd be happy to chat to you - hearing another voice in the same space might help.
My adult son who is now 26 has a similar problem in social situations. He has chronic pain, as well as acute pain in his feet when standing. And he has high functioning autism.
I was chair of our surgery's Patient Participation Group so he had to come along with me to meetings. After chairing the AGM and dealing with all the questions and comments people had afterwards during refreshments, at a quiet moment I scanned the room and found him in what I thought was a deep conversation with a lovely older women.
I mentioned on the way home in the car that he seemed to be enjoying speaking with her, and what were they talking about. He replied he had no idea but that he had figured out that he could ask a question to get them talking about themselves, and they would natter on, and he could make all the right noises that showed he was listening but zone out at the same time. He said it worked particularly well with this lady as she had dementia so she told the same story over and over over the months, and eventually he took in the whole thing.
Later she told me what a lovely young man he was, and how good he was at listening!
So now he has a series of questions he asks people so that he doesn't have to talk to them, only vaguely listen. Seems to work for him!
His father has taken things a step further and never socialises anymore. He lives on his own, and has always hated socialising, and is so much more happy this way. In fact that is one of the reasons why he left me, he hates socialising! Sadly his mother never taught him the tricks of socialising the way I taught my son!
We have a phrase that people often use, finding your tribe. My son found his tribe by having his set questions allowing him to cope with the pain and the socialising. My husband found his tribe, a tribe of one.
I wonder if you need to find your tribe, which might not be socialising with your wife, but maybe finding a wellness type group for people with chronic pain. Many areas now have them, sometimes it is outdoor activities, sometimes it is art or craft. There are also Men's Sheds which might suit you better. The social prescriber or care coordinator at your GP surgery will know about what is available locally.
My son wanted to join our local Men's Shed when it was set up, but the pandemic got in the way. I must facilitate him to explore that avenue again!
Thanks so much for your anecdote. I definitely have a lot in common with your son. I too learned that most people will just continue talking about themselves if given the opportunity. I remember reading that the concept of charm is ultimately less about how you are interact with people but rather how you make them feel. Its just quite draining to pretend someone is interesting when you're in pain.
And that's quite sweet about your son interacting with the elderly lady. I also really like chatting with older people. We have a lady next door to us (we live in Greece) who has dementia, and we've been getting her collection of stray dogs neutered.
Hi, i'm so sorry you are going through this at such a young age. I have lived with Chronic Pain Syndrome since a stroke in 1999. To be honest, i realized early on into the pain journey that no one wants to know about your pain, especially in social situations. I also leant that distraction was the best help. My relationship fell apart while i was rebuilding the physical damage from the stroke so that was the end of that. I through myself into my business that i had to rebuild from scratch, eventually i turned into a prolific world traveler and did all sorts of adventures including lots of helping and teaching in remote corners of the world. This did not stop the pain or the loneliness but it shoved it into a corner and let me live a life full of amazing things i never dreamt i would be able to do when i was first learning to live with this dreadful painful condition. Immerse yourself into something you can get passionate about and make this your topic....i'm not suggesting you pretend to others that your pain does not exist but don't make it your main topic. But it does take time so focus and be patient. My best wishes to you.
We totally relate to what you are saying. People not dealing with pain can't understand what it is like and how debilitating it makes you feel. I feel like my life has changed as a result of dealing with it and feel lonely and isolated. It is a challenge.
hello - I can only send much empathy. Prior to my accident (when I was 18) I was very sociable, outgoing - loved to spend time with my friends. Since then, it seems like another life, another version of me. I’ve become very isolated but on purpose because I can only cope with so much. I’m a lot more guarded and I know my family think I’m being objectionable. They just don’t understand - but that’s not their fault. It is hard to understand how chronic pain can have such an immense impact it can flatten character, personality and put limits on your time and energy for others. Sending solidarity.
Everything you say, I suffer with now. Lack of interest in my hobbies, not being able to relate to my friends and family and feeling as though my life has been taken into a totally different direction that I don't want to follow. Can I ask everyone here, how it has affected their work and what you do now in the way of earning a living? I am struggling with work due to my difficulty with concentration, mobility restrictions etc. and don't know which direction to go into. Do I get PIP, Disability Allowance or just struggle on trying to find an employer who will understand my restrictions and hire me anyway?
If it's affecting you to that extent (and you should know if it is), then I would apply for some kind of financial assistance and do your best to take care of yourself, mentally, spiritually, physically, emotionally, etc.
In my experience, no employer will care. These systems are not really designed with chronic pain in mind. Take care of yourself....
Unfortunately not. I had a surgery which just multiplied the pain exponentially. Very difficult to deal with. But yes, I'll reiterate as I tried to work for a while, but now I am so completely past these things, take care of yourself.
I worked for as long as I could. I was ‘lucky’ that since my disabilities are very noticeable employers made sure there were adjustments so that it wouldn’t be damaging to me. Since a big deterioration in the last ten years - I now live an even smaller life, doing what I can from home, which sadly is very little. Get what help you need. You will need it as pain and disability can be costly.
I understand. Mine is pretty invisible, which comes with its own challenges, but I'm sure having it be so noticeable is also not easy. Hope you're hanging in there and managing the best you can.
You have to pay for training but please trust me - it is eye opening, wish I knew about it before I first applied.
I paid for the training and now am preparing for my "change of circumstances" review, confident that will be rewarded the enhanced rates for both.
About my UC issue - there was a software problem with my application and finally I involved management of my local Jobs Centre, after having an anxiety attack there.
She was very understanding and got mad about the incompetence of the staff member.
She fixed the issue manually and helped me get some payments.
Pushed on the right people to assess my limited capability to work and about 2 months after that I got back payments for previous months.
I am thankful for her help, even though I think she was afraid of potential law suit...
I don't need PIP training, I just want to ensure that I fill out the forms correctly so I have the best chance of receiving the money. Why is the process draining and long winded? I am not applying for UC as well so that should make things quicker for me.
some of mine are invisible too and I know a little of what challenges having such disabilities are like. I think the public needs a wake-up call in terms of understanding disabilities-invisible/visible and long term conditions/Pain. It seems they only understand when it happens to them or a family/friend.
Gosh, I agree completely. It seems with so much passion about causes these days, it's odd that there are no big movements around chronic pain and disabilities... And it's so difficult to talk about, because no one really understands or wants to...
I totally agree - chronic pain is seen as this invisible, psychological mental problem and it's because if you don't suffer from it, you can never understand how difficult it is to live with, particularly as all the messages are that it never goes away which is the worst thing you want to be told when you are in pain. There needs to be a really high profile campaign about chronic pain. Does anyone know if chronic pain counts as a disability?
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