We talked to people who were single, in young couples and those with toddlers, teenagers, grown-up children and grandchildren.
Some women had been told that they shouldn’t have children because of their condition, while a woman with endometriosis was surprised and delighted when she became pregnant because she’d been told she probably wouldn’t be able to conceive. A woman with a genetic condition thought that she and her partner might adopt.
Other young women were concerned about whether they should risk a pregnancy, as one said, ‘No one can tell me what my pain would be like if I was pregnant’. They were also concerned about whether they would need to stop their medication and how they would cope with bringing up small children. Some raised the subject with their doctor or pain specialist and had found them very helpful.
Some women found that their pain reduced during pregnancy. A woman with upper limb pain thought that this might be because she was doing less work with her hands, and a woman with back pain wondered whether it was because her muscles and joints were relaxed.
Another, who had stopped her medication for the first 6 months, described pregnancy as difficult and painful, but said she had no regrets (see also ‘Managing, taking and stopping medication‘).
Children are resilient and adaptable, but parents often felt guilty about the things they hadn’t been able to do for them. Several people said they were less patient and sometimes snapped at their children unnecessarily. One woman was concerned that her children might remember her as bad-tempered, or become grumpy adults themselves.
Was worried that her children might remember her as “Angry Mummy” or become grumpy themselves.
People had learnt various ways of coping with children, sometimes picking up tips from professionals or people in support groups. One mother pointed out that it’s easier to deal with an occupied child than a bored and whiney child, so she tried to make sure that there were lots of active things for her daughter to do.
Other advice included concentrating on what you can do, not what you can’t: getting toddlers to sit next to you or climb up your legs rather than picking them up, and involving children in helping and tidying. Some had involved their children in their pain management, particularly relaxation and basic foot massage.
Time to yourself was important and friends and family could often help. A couple of people suggested that it was a good idea to invite other children over to play so, when the favour was returned, they got a break. One woman found it invaluable for her daughter to go to nursery for a couple of mornings a week.
Other people were concerned because they couldn’t play rough and tumble games with young children or that they might miss out on opportunities like riding a bike, camping, playing sport or going on outings. One woman was aware that her toddler had started to wait until ‘Daddy’ got home to play rough games.
Worries that she can’t pick her daughter up and has noticed that she will only play rough and…
Sometimes people worried that they missed out on experiences and events such as sports days and parent evenings. However there was a general feeling that it was important to focus on the things that they could do together.
Feels that he can be a proper Dad he just has to do less active things with his children.
Children could sometimes find their parent’s illness confusing, but different children react in different ways. Some will ask questions about their parent’s condition, while others seem unconcerned or worry in private. One woman was upset to discover that one of her daughters had been anxious and unhappy but hadn’t wanted to burden her mother with her problems.
Another woman explained that she didn’t make a point of talking about pain to her children, but if they asked questions she was always honest with them.
Feels it is important to explain things to children when they ask.
Several people with older children had been concerned that they had been bad parents because of their pain but were reassured that their children had turned out okay and did not resent them. One woman felt her daughter had taken on too much responsibility as a teenager, however her daughter assured her that she had not missed out on anything.
Was concerned because her daughter took on a lot of responsibility although she assured her that…
Some felt that their children had learnt from their experiences and were much more aware of the needs of people with disabilities.
Was concerned that she didn’t explain enough to her children but on the positive side they are…
Several people we spoke to helped to look after their grandchildren, which they felt gave them a purpose in life and provided a great distraction, although they had to be careful not to overdo things.
Enjoys looking after her grandson after school. When she can’t manage she drops him off at a…
One woman found it frustrating that she can’t play with her grandchildren as she would like but explained that they are very accepting and understand that she has pain.