Social life and special occasions
Nearly everyone we talked to felt that their pain had affected their social life to some extent, but also said that it was important to try to maintain a social life.
Several people explained that at their lowest point they had become very withdrawn because they found company difficult and going out only increased their pain levels. Those with partners were aware that their pain also limited their partner's ability to socialise, since they often had to cancel or leave events early because of pain and tiredness.
People also described feeling left out or bored because of not being able to dance, or drink alcohol, or having to sit when everybody else was standing. A woman explained that when her pain was so bad that she spent all day lying on the floor, she had very little to talk about when she met up with friends or family.
- Age at interview:
- Pensions administrator; married; 2 children.
I am actually very lucky in that my pain is really quite intermittent these days and I find it much easier to cope with social events, long days on your feet or full day events.
When I was in considerable pain, I would sometimes get round it by perhaps resting during the day so that I could go out in the evening type of thing.
But, often it wasn't the physical difficulties that hindered me going out to things socially, it was very often my sort of mental attitude. 'I've not been doing anything, so what am I going to speak about?'. If I do meet with people 'What have you been doing today?', 'Well actually I've been lying on the floor most of the day because my back's been sore'.
It's a conversation killer. So a lot of it was my mental attitude about going out. I didn't feel that I was good company. I didn't feel that people would want to talk to me about anything other than my back pain and that wasn't something that I really wanted to do on a social occasion when I went out.
Despite the problems, several people emphasised that it is possible to have an active social life, it just may be different from before. One man reflected that life could change regardless of the pain and you just had to accept it, and a woman said that that it was surprisingly easy to give up things that made you feel unwell. Others said it was about working out better ways of doing things or finding other social activities. Trying to maintain as normal a life as possible by continuing with activities and social contact can help to keep peoples’ moods stable and stop them feeling alone and depressed. This in turn can help with how people experience levels of pain.
- Age at interview:
- Medically retired fitter; married; 5 children.
Well again looking back from say 10 years ago, I basically didn't have a social life as such, I just closed myself off, I basically just did what I had to do or what I wanted to do, family functions, even some I didn't even go to I was in too much pain, 4, 5 years ago I went to 2 or 3 but I came home early, I'd say away I'm no sitting there, sitting in a corner, because you couldn't get up and dance say for instance, 'you want a drink, oh I'll get you it', you were treated as though you were even worse than what you actually were, again that wasn't for me.
But that again changed a lot with going to the group, again the group was getting me out in a different social, that gave me a different social outlet, and I was really keen to go to these groups and participate and talk and if I can go to these groups and do this and do that then why can't I go out, and I started going out and thoroughly enjoying it.
But its an awful lot of things that you've basically got to learn and if you can get it into your head that you can have a life, you can have a social life, ok it might be slightly different from what you're used to, you might not get up and dance for 5 hours a night, does it matter? there's a lot of people can't, and you know if you start to realise it and don't feel sorry for yourself so much then you're still the same person.
Ok it might take you 10 mins to walk to the bar and come back, it doesn't matter, and if you sit down there's an awful lot of people that are the same but for different reasons, you know my Mum's 82, she can't do what she used to do, does that make her a bad person? does that mean she's to stay in the house?
And if you start and look at life like that you get an awful lot of changes in life, even when you haven't got chronic pain, I mean you get changes in your life from when you're born till you go to the grave, and you just get on with it, so just because you've got chronic pain, yes you're going to have changes but just deal with them, don't block yourself off away.
Seating, and prolonged physical inactivity, were major problems. Some had given up going to the theatre or cinema as a result. Seating could also put people off going to pubs, restaurants, churches and school events. Booking a seat at the end of the row was recommended. Sometimes there is special seating for people with disabilities so they can stretch their legs out and get up easily if they need to without disturbing others.
A woman joked that she could write a book, “My Search For a Comfortable Chair”, and was quite happy to ask people for a cushion. She and several others gave a useful tip of using a bag or a rolled up coat as a cushion. Others found it helpful to get up and move regularly or change position.
- Age at interview:
- Medically retired project manager; married; 4 children.
It's quite funny you ask me about special occasions because I like the theatre. I love musicals and we touched, I always say if I write a book up, call it 'My Search for a Comfortable Chair' because I've yet to find one really, you know, and if I want to go to the theatre you know, make sure plan well in advance and make sure that we get seats from the end so you've got plenty of leg room because I have, if my legs are trapped I've had it and I don't know whether it's psychological.
I mean I know they have to have space for them, but as I say I don't know if it's psychological or not but if I were somewhere where there wasn't a lot of leg room I would like be really in agony and I would have to think 'I've got to go out', you know, so always plan ahead like that and make sure that we've got seats in the theatre where we know we can easily move so that if we want to get up and stretch, you know, that we can do that without disturbing anybody else.
So there's always a lot of thought goes into it. If I'm going to say for instance, New Year's Eve, because I love New Year's Eve, we always go to a special dinner for that.
I would have my outfit planned well in advance so that I haven't got to think 'Ooh what am I going to wear' so that I'd know what I was going to wear and as for the evening I would definitely rest all day so that I could make sure that I would enjoy it. As for when we get there and what the situation is seating's like it's pot-luck really. You know, you don't know. If I'm going anywhere and I do know the people I would just say 'Do you mind if I sit in that chair' you know.
That's as I'm saying, now I don't care. I mean everybody that I know anyway personally knows about my back so you know they go 'Are you okay?' or something you often see me doing is if I'm somewhere and it's a right grotty old chair is you see me putting my handbag in my back because you know that, to have one of those little things that you put in your back is wonderful and... or what to say to somebody, you know, 'Do you mind if I have a cushion?' because putting that in your back makes a lot of difference.
Because the thing is if you're, if you're going somewhere for, say, you are going out to dinner with somebody or you're going to something it really is horrible if you haven't got a comfortable chair because I said you know I hold the record for doggy bags. So I would just... yeah I do prepare in as much as I would definitely make sure that I have a nice rest in the afternoon so that by the time the evening comes.
Partners often helped in social settings - one man's wife was used to explaining to waiters that he had a bad back and needed to get up and walk around.
- Age at interview:
- Age at diagnosis:
- Writer/driver; married; 2 children.
At the beginning, it was quite embarrassing in restaurants for example. I mean we have family, we go out occasionally to restaurants or to their houses for dinners and so on and so forth. And nobody likes to be the awkward guest and nobody likes to make scenes in restaurants and all the rest of it, but most restaurant chairs are extremely uncomfortable.
They are very upright and they are absolutely the last thing I like to sit in, and many times I have had to ask the restaurant if they can provide something more appropriate. Or many times I've had to roll up my overcoat to use as a cushion so that I can sort of recline more and sometimes when I've known which restaurant, I mean we hardly ever go to restaurants but that's why I can remember all the details because this doesn't happen very often.
But occasionally I've known that we were going with my brother-in-law to a favourite restaurant of his. I knew the place. I would take a big cushion because I knew the chairs were awful and I knew I would be desperately uncomfortable. Sometimes my wife has to explain to waiters who look at me rather astonished as I leap to my feet in the middle of the meal and go walkabout, you know, because I've just got to, I've got to move. I can't sit like that for very long but she's learned to cope with that.
She just explains 'Oh he has a bad back. He has to move around.' And most people once they know it's not their beautiful soup that you're leaping away from it's... you know it's, it's just your back. But it is occasionally, some hosts and hostesses are quite nonplussed when you say, you arrive at their beautifully set dinner table and you look at the chair and you say 'I'm awfully sorry but I can't possibly sit in that chair.' And they don't have another kind of chair so you then have to go in to their living room, grab a couple of cushions and try and make yourself comfortable as best you can.
It's not a big problem but it's, it has occasionally been a problem. And I think now because of the pain management technique, I can focus on the guests, the conversation, the food and the wine to such a high degree that I've trained myself to sit in uncomfortable chairs for much longer than I used to be able to.
Eating out could also be difficult for those who find it hard to bend forward or use a knife and fork. One woman said that she could no longer bear to eat in public because her pain forced her to eat in a way that was so different from the good manners she had been taught.
Several people preferred not to go to pubs or parties because they'd given up drinking alcohol. This was sometimes because of their medication but also because it could lead to them being more active (e.g. joining in with the dancing) which they would regret when they were in increased pain the following day.
Depending on the activity, it is sometimes possible to wait for a 'good day' and use pacing techniques to minimise the difficulties. One man felt that you had to be quite ruthless and use your good days to do this type of thing and let friends visit you on the 'not so good' days.
- Age at interview:
- Medically retired horse breaker; divorced; 3 children.
Well, firstly make sure it's going to be a good day and not just a good start to the day. If it is a good day, I mean I have got a whole list of things that I want to do. I fully intend to do. Some of them to do with horses, some of them not and if I think I'm going to get a good day then you've got to be pretty ruthless and not let other people get in the way because you can end up frittering your time away and do nothing you know just because of other people getting in the way.
So you have got to be a little bit selfish, a little bit self-centred in that respect. Say if you say 'Right today, I'm going to, for instance, go to that Jack Vettriano exhibition' somebody rings up wanting to do something else it's got to be a 'No'. You get yourself to the exhibition and you always, always stay within your limits. I mean I'll see as much as I can but if that, that ache starts on the, in that L5 area then you know I'll call it a day but until it does I know I'll walk round the exhibition as many times as I want, I'll see what I want to do.
But I did find out very quickly you've got to be quite ruthless with people. They don't know what you're doing. They haven't got a clue what it is your doing or why you're doing it. And I don't feel disposed to explain it to them. So if somebody says well you know 'Can I come over and do this'. The answer is 'No, I'm busy'. And I'll get myself down to the exhibition or I'll get myself to see this new horse or I'll go to an event or' I mean they are more than welcome to come along with me but I'm still going to do it, you know.
Otherwise, you do fritter your good days away and I refuse to do that. If you're, if you plan for it, and you can be just a little bit ruthless then you're okay. I mean on a day, a bad day, people can come and see you then, can't they, when you are sat at home. That's okay if they can jump in their car and driver over here and I'll sit and talk to them all day. But a day I'm going out, then I'm going out. Sounds cruel but it works. You've got to do something like that.
Of course some activities cannot wait - a man who liked to go to rugby matches had opted to use a wheelchair on these occasions to avoid getting knocked. Wheelchairs were also useful for activities that required more walking such as gardens or large exhibitions.
Many people avoided crowds or busy places, such as clubs or sports matches because they worried about getting bumped into and sometimes found the noise difficult to put up with when they were in pain. Often people opted to do the majority of their socialising at home where they could get comfortable and lie down if they needed to, others kept in touch with friends and family by telephone and e-mail.
Special occasions, such as weddings and birthdays, often required forward planning, to the level of military precision. Others told us that they would adjust their medication so they could last through an event.
- Age at interview:
- Age at diagnosis:
- Medically retired care officer; married; 3 children.
Well as I say I made a boob at the weekend, last weekend, because I didn't pace myself for the special occasion, and I was ill, I mean, it was painful all the way through it, and it should've been a lovely occasion, and it was a case of I missed a lot because I was in so much pain.
But normally when you think about it, if you go on a night out and its 7 o'clock at night you're leaving, you might've had a good nights sleep, fine, but you got up, you do what you want to do, not a lot, you don't work hard that day, you do very little, maybe the afternoon you go and lie down and go for a wee sleep, if you can, if you can't just pop some music on and relax lying on your bed, its amazing what it does to you, because you're not sleeping, but your body's relaxing, which means that if your muscles relaxed you're not in that much pain.
So then you get up, then you can go for a leisurely shower or a bath whatever. You're not rushing into the shower and getting scrubbed in two minutes and run back out and start getting dressed five minutes before you're going out, you're actually doing it over maybe three hours, that you're talking about if you're going out a seven start getting your stuff ready at four.
Put your clothes out, have your bath run, put your candles on, put some music on, but make sure you're relaxed, the more you relax the better it is for your body, because if you're in pain every where in your body it tenses up and the more tense you become the greater the pain.
So if you're going out at 7 o'clock you start at maybe 4 o'clock, do very little all day. Start at 4 o'clock and say right I'll make something to eat first, so you'll maybe have a couple of sandwiches, then you go and lay all your clothes out, if you've got a bath, put bubble bath in your bath, put some candles on, light some candles, have a lovely relaxing bath.
I don't mean anything like a five minute scrub, I mean you can lie, half an hour, as long as you're relaxed, you get up, you dry yourself off, you can walk about in your housecoat for a wee while. Maybe for ten minutes, say ten minutes before you're going away, then you just get yourself dressed, so that when you walk out that door going to where ever you're going at 7 o'clock you are the happiest most relaxed person you'll meet.
It is completely different from what you used to do, you're in and out the bath, hair blow dried, everything all ready in 15 minutes and you're out the door. You can't do that anymore, and I mean it would be stupid to try. So yes, pacing for social events, even pacing for doing anything in your life, it should be that you are comfortable, its not a case of 'I can't do that because I'll get sore'.
- Age at interview:
- Age at diagnosis:
- Press officer; single.
To think about special events actually takes military planning. Everything in my life takes a great deal of planning but for example I recently went to a 60th birthday party, big family do and I had to make sure 6 months in advance when the venue was booked that it was going to be accessible because if there were steps there it would just cause too much pain and I physically probably wouldn't be able to do it. So that was the beginning of the plans.
I also had to make sure that there was going to be comfortable seating when I was there. I had to make sure that there was suitably equipped disabled facilities, somewhere to lie down if I needed a rest during the day because I do find social events particularly where there are an awful lot of people there quite tiring, and I know that although my illness has been called fatigue, chronic fatigue, that isn't my particular symptom.
My particular symptom is the pain but I do believe that pain can cause fatigue, particularly if you are in situations where you have a lot of other stimulus. You have bright lights and lots of noise, perhaps you don't have the seating that you would be used to and you might not be as warm as you might need to be and that makes any kind of social event something to be really considered before you go. I mean I have a lot of friends, I have a very big family and I don't like letting people down but at the same time they know if they invite me to something it's not necessarily a given that I can go.
I think it's an unfortunate side effect of the way that pain affects my life but it's something that I've realised is just the way it is and I'm best to save my energy and my commitment for the really important things that people really appreciate when I make the effort when I go. Rather than I don't have a really hectic social life on the day-to-day basis, but I do make the effort to go to important things such as weddings and birthdays and I have a really great time because I've sort of saved up my energy and really enjoy myself because it is really a special event for me to be there.
- Age at interview:
- Retired agricultural worker; married; 4 children.
But, I go out to a lot of functions, what I tend to do now when I go out, when I know I'm going out to maybe the wife's sister's birthday or somebody's anniversary or something like that, what I do is I leave off my medication during the day, some of the day, I maybe just take one capsule after my dinner or something, and we generally go out about 8 o'clock or half past eight at night.
And what I do is I take a capsule, a couple of capsules, a painkiller at 7 o'clock, and I'll go out and I'll be fine, I'll be just the same as everybody else and during the course of the evening, or during the course of the day or whatever time it is, using the evening as just an example, 7 o'clock, by 10 o'clock I'm right in amongst the rest of the people like I said.
I don't do a lot of dancing anyway because I'm not able, but I enjoy myself, go for a game of pool with me brother-in-law, we have a laugh, we have a carry on. At 10 o'clock or half past ten, because I know these parties goes on until 1 o'clock in the morning most of the time, I will keep the pill back that I had from dinnertime, I will take that painkiller about half past ten or eleven o'clock at night just to keep me from beginning to feel very unwell and out of sorts, because I'm in my wife's company and there's a lot of them, and that's the way I do it, that's the way I manage to go from staying in the house and grumping at everybody to going out and greeting everybody, and speaking to everybody. I control it with the amount of pills I take during the day.
While it was preferable to stay within their limitations some felt it was important to occasionally 'let your hair down' and live with the consequences.
- Age at interview:
- Home carer (not working); married; 3 children.
You know, my friends are wonderful, a wonderful circle of friends, not including the friends I've made from the pain clinic, but sort of friends I've had for years are very understanding and I think, because I've been like this for so long, they know how far they can push. And I have fun with them, but you know when to stop and that, and they know when I say, you know, 'Well I just can't dance this evening', and they understand that.
But that's hard, you know, when you go to parties and everybody's jumping around having a good time, and you know that you can't do it and, if you have a few to drink, which you shouldn't drink with the tablets, and I don't actually do that very often 'cos it does make me feel so bad.
But I will have a drink occasionally and perhaps have more than I should have and I let my hair down and I lead a 'normal', you know, I'll try to lead a normal life and be like the rest. Then I just suffer the next day, I can't move.
But at the time, it was good and I think you have to do that every now and again, you have to do, you have to just go over that boundary really and try and be as normal as you can and not worry about what's going to happen tomorrow. Not very, don't do this very often but, you know, just every now and again you have to do it just to, just to bring some normality into your life really, just, just do it and, you know, worry about it tomorrow.
But the longer you're in chronic pain, the less you do it because you know the consequences, but no, I just advise everyone, just every now and again, just do it, you know, if it's just once or twice a year, do it.
Sometimes the pain is too great and people have to cancel plans, but, as several pointed out, anyone can get ill and have to deal with the disappointment of missing an important event. People gave a number of tips to make going out and planning for a social event or special occasion easier:
- Phone the venue to ask about seating, accessibility and somewhere to lie down if necessary
- Consider using a wheelchair if there is a lot of walking involved
- Stay with friends, or in a B&B or hotel if the event is away from home
- Wear comfortable, not tight-fitting, clothing
- Do some gentle exercise or stretching
- Pace and reduce activities and rest for a couple of days before
- Get a good night's sleep
- Avoid stressful situations like being late or arguing
- Pace yourself through the day
- Plan how you will get there and home
- Plan and let people know what time you will be leaving
- Try to 'act normal' and avoid talking about pain, but make sure that there is someone with you who knows and can cover for you if necessary
- Carry a mobile phone so you can get help even if in an unfamiliar place
- Plan a few quiet days of recovery time
Last reviewed May 2015.
Last updated May 2015.