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Several people explained that at their lowest point they had become very withdrawn because they found company difficult and going out only increased their pain levels.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.
Found socialising difficult because she had often been lying on the floor all day and had nothing…
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.
Became withdrawn but now realise that life moves on and you just have to make the best of it.
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.
Jokes that she should write a book “My search for a comfortable chair” and gives tips for coping…
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.
Has got used to asking for cushions for chairs in restaurants but sometimes has to get up and…
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.
Says you have to be ruthless on good days and do the things that you want to do.
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.
Describes how she prepares for a special occasion.
Feels that going to a special occasion takes military style planning.
Adjusts his medication so that he can last through social events.
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.
Feels that sometimes it is worth letting her hair down and having a good night although has to…
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