Rheumatoid Arthritis

Childcare can be more difficult and mothers, fathers and children may need to adapt. This largely depends on the age of the children and the symptoms of the parent. Several people thought their RA had only minimally affected their older children or not at all.

Picking up a baby or toddler can be difficult and one woman described her young baby as a 'monkey' as she clung on to her. Another mother described how her children adapted, including how her daughter used a stool to get in the bath with minimal help. One woman had difficulties picking up her child to breastfeed, especially at night, so her husband brought her the baby.

One woman used an adjustable bath seat to bath her baby, and a 'Hippy Chick Hip seat' and back pack made carrying her toddler much easier. Pushing a pushchair one-handed whilst holding onto a toddler was difficult and so one woman put the toddler on reins to overcome this. Kneeling on the floor is often difficult or impossible which made it hard to play with toddlers. Nappy changing was easier on a table than on the floor, although it involved picking the child up. Rescuing toddlers who have fallen can also be difficult, but one woman felt this had made her child more resilient - she got up and rubbed her own knees better.

Getting babies and children into car seats (and shopping trolleys) was a problem if the clips and fixings required pushing hard. These difficulties led one woman to stay at home.

Early morning stiffness can be a problem when young children wake early and need care. People talked about how their children of all ages needed to be more independent, learn practical skills and be more self-sufficient. One woman had two young children when first diagnosed and felt they had to grow up faster. These additional responsibilities were also seen as a benefit. Older children, who had grown up with a parent with RA, were regarded as more understanding, thoughtful, caring and compassionate people who accepted that not everyone was as able as themselves.

Keeping medicines out of reach of children is very important. One woman contacted NHS Direct when her 2 year old picked up and spilt her pill box onto the floor and she was worried one of the tablets was missing.

Younger children still expected a normal life and did not understand the parent's problems. One mother said the children did not like having their father do things for them that she normally did, causing friction which she found stressful. One father said his children had difficulty understanding why he needed more rest and could not play with them; he found he got irritable quickly. The local GP surgery ran helpful sessions for children to discuss issues they had when a parent had an illness (see 'Impact of diagnosis on family and others').

One partner described how he had adapted and taken on more of the childcare to relieve his wife when he was not at work.

Children were often supportive and helped overcome some of their parents' worries. However one woman was upset because her daughter was bullied at school 'because her mother was disabled' and could not take her swimming, etc. Another woman who has had health problems since before her son was born thinks herself lucky because her teenage son is caring and is not embarrassed of her in front of others. She tries and makes sure that he does not loose out on teen activities like sport and meeting friends. 

Several people regretted they could not be very active with their children, e.g. playing football, walking, swimming, outdoor pursuits and trips out. A father said he did as much as he could when he felt well, and a mother still went cycling with her daughter.

Hospital stays for rehabilitation and operations involved separation and were often difficult for both children and parents. One woman felt her 21 year old daughter had been affected emotionally by this all her life and always had to be reassured that going into hospital did not mean 'Mum was going to die'. She had first gone into hospital when her daughter was 9 months old and several times since. Hospital outpatient visits also need planning if children need a babysitter.

Several people had support with childcare from their own parents and friends (see 'Sources of support'). A few people we talked to were worried about their children developing RA in later life; often growing pains in children exacerbated this worry. Two children had tests to check for RA but these were negative (see 'Ideas about the causes of RA').