Life after Diagnosis

(Published in Arthritis Today, January 2002, No 115)

Going to a special and a mainstream school

By the time Bethany was four we had become more used to clinical aspects of coping with her arthritis, but now we had to consider her education. At the time, she wore full arm and leg splints at night and needed turning in bed every 90 minutes. During the day she had up to two long physiotherapy sessions, enjoyed playing in the bath (because the warm water soothed her joints) and fell asleep every four hours. She was very wary of physical contact with anybody, because she hurt so much. The health visitor and paediatrician confirmed that Bethany was far too unwell to attend a mainstream school.

In our local area, we had no school options; there was one suitable special school and no guarantee they had room for her. Meanwhile, the local education authority sent all parents of well children (our friends and peers) brochures about local mainstream schools, and invited them to parents evening to help them choose a school. We could not even visit the special school unless they had a place to offer. We felt sidelined by the consequences of her illness from the discussions and shared experiences of all the other parents we knew. We only found out she had a place when one Friday at the end of the summer holidays, I got a phone call from the taxi company to say they would be calling on Monday to take her to school. Which school? I had to ask. When I telephoned the school no-one answered. We then had a bizarre weekend getting her and her uniform ready for school but not having any official confirmation other than the taxi drivers message.

Twenty months later, Bethany came into a season of quiet disease and was well enough to transfer to a mainstream school, where she settled quickly and happily. During her stay at that school, she had two more long periods of flare-up in her arthritis, and had to use her wheelchair. She had time off school when she had joint injections, but overall the school have been able to accommodate these bouts of illness, and have tried to nurture her morale and social skills.

Living with risk

Living with a child in pain who has an unstable long-term illness, means learning to take daily risks and making decisions that parents of healthy children rarely have to consider. As a parent of a child with arthritis, you have to learn which activities cause problems, and take small or serious risks. For example, most children love bouncy castles at parties, fairs or school events. Your children too would love to join in, but your child with severe arthritis could get knocked by other bouncers, or her joints could be jarred by the repetitive jumping. What should you do? Do you let the well child have a go but not the child with arthritis? Do you avoid the activity for all the children, or do you discretely wait until there are few other children about, take the risk and help your eager child climb aboard, knowing that she will be more sore tomorrow?

Like many other families, we wanted our children to have fun, to join in, and to try new things, but this involved taking calculated risks. Living like this is emotionally draining, and the next day when the child hurts, it is easy to doubt your decisions. I think living with these constant decisions about risks is one reason why parents of children with arthritis need more support and reassurance from those around them.

Seizing the day

During her second stay in hospital a mother of a child who had had arthritis for many years advised me to 'seize the day' when she had good days. She explained that her daughters health was very unstable so she made a huge effort to really pack good experiences into the good times; and the memory of these helped them through the bad times. After the first years of severe illness, I remembered this advice when Bethany had a season of feeling 'more well', both physically and emotionally. She and her sister joined the local dancing group and enjoyed prettily skipping around with the other girls every Saturday morning. Bethany passed her first ballet examination, and generally tried a raft of new things that she had been unable to do before.

When she had the next flare-up in all her symptoms, she found all movement painful, and became awkward and slow. She hated being the last to do what the teacher asked and was always well aware that she looked different.

The teacher was kind and sympathetic but Bethany had to withdraw from the ballet class. That decision was depressing for her at the time but now she is proud of her achievement and is pleased that she did well when given the opportunity.

Opportunities to learn from others

Because of her arthritis, we have got to know some wonderful families who also include sick or disabled children. It has been a privilege to get to know these families, and share their lives. Bethany and Ruth have seen how kids and grown-ups overcome calamity; but know that sometimes friends die young. I have watched my two girls develop compassion, courage and kindness, which I am sure, is in part because we live with arthritis. I also believe we have become a closer family than we would have been because of arthritis.

Researching how other families cope

In 1996, I began a research study to explore with other families what the important experiences were of caring for a child with arthritis at home. The Arthritis Research Campaign helped with some of the costs, and in 2001, I finally gained my PhD from the University of Brighton. This original research is subtitled 'views from the inside' and gives a full account of what mothers, fathers, brothers sisters and the children with arthritis think and feel about their experiences. The research findings also show how parents struggle to relate meaningfully with healthcare professionals, and how issues about physical health, emotions, relationships, education and benefits are all interlinked. The comprehensive findings will help inform and support the next generation of families who learn that their child has arthritis. The research would also help healthcare professionals to understand more about the lives of children; after all, 'he who aspires to be his brothers keeper must know how his brother lives'.[1]

Mirage effect

As a parent, you have to be constantly vigilant, and monitor the child's health all the time: you are never off duty. Like many children with arthritis, Bethany also had periods of looking well while actually being very ill. This has sometimes confused onlookers because she appeared well but her appearance (the mirage) was only achieved through unseen daily perseverance with physiotherapy exercises, splints, rests, prescribed medicines, and regular blood tests. Ironically, even when the children seem healthy, they often express a sense of being different from other children.

Bethany today

She is currently in remission, which has coincided with transferring to a huge secondary school. She has settled well and we really appreciate the help of the support staff. She continues to develop her independence, mobility and stamina. She and her sister Ruth were bridesmaids recently and were both able to enjoy and take a full part in the daylong celebrations.

In conclusion

One of the things that all the parents and many children in the research said was that people around them, even professionals, little understood what it was really like to be in a family that included a child with arthritis. So now, together with colleagues from the University of Brighton and AMAZE (an independent charity for parents of children with special needs), I am working to launch a range of information reports which will be accessible from a new website for professionals and parents of children with arthritis. I hope that this article and the new website will go some way to explain more about the experiences of families like ours and hundreds of others who include a child with arthritis.

[1] J Shaw Billings (1968) Familiar Medical Quotations. In Strauss MB (Ed) Boston M.A: Little Brown, page 380

Information provided by:
CHOICES, P.O.Box 58, Hove BN3 5WN.
www.kidswitharthritis.org