Growing Up with Rheumatoid Arthritis

I migrated from England to Perth with my family when I was ten years old. Eighteen months later I was diagnosed with Juvenile Rheumatoid Arthritis (JRA).

Our first home in Perth was a rented duplex on Selby Street in Shenton Park just across the road from Royal Perth Rehabilitation Hospital. I went to Jolimont Primary School and we were made to feel very welcome. A lovely, large Australian family, who lived just around the corner, ‘adopted’ us and I am still great friends with their eldest daughter.

My first clear memory of having physical pain associated with JRA was after a day out with our adopted family at Mundaring Weir. We spent lots of time climbing up and down some of the slippery slopes by the side of the weir. That night I could not get to sleep because of pain in my legs – no matter what I did they ached and ached.

I cannot clearly remember the actual timing, although I seem to think that it must have been during the winter months. Things progressed, if you can call it that. At Brownies (now Dibbler Guides) I was unable to complete one of the activities for passing a badge – this involved sitting cross legged on the floor and then rising to a standing position. I was just unable to do this and, on reflection, there must have been other concerns, because my mother was informed.

Something else I remember was coming last in a running race and being surprised that I could not easily make the distance. I was in company with another girl in my year and we laughed about our performance and evidently impressed the teachers with our humour. However, I can remember even now how puzzled I was at the time; because I had been good at sports in England. I enjoyed sports, particularly netball, and seem to remember doing well in running races.

Eventually we ended up at the doctors and were referred to a pediatrician. I cannot remember much of the consultation, but I do remember that I was asked to wait outside while the doctor spoke to my mother. When she came out of the room she had been crying. So I thought I had a terminal illness and I think I was quite impressed by that.

My father came with Mum and I for the next appointment to a rheumatologist, the late Dr Evan Owen, who impressed us all. I then spent four weeks in Ward 10 at the Royal Perth Rehabilitation Hospital. My arms and legs were in plaster splints and I was confined to bed for most of that time.

During this time we were in the process of building a house in the hills in Kalamunda and when I left hospital I moved straight into our new home in the hills. While this was exciting and had been much anticipated, it necessitated a change of schools.

Jolimont had been a small and very welcoming school and over the 18 months I had been there I had settled in really well. The girls in my Year 6 class organized a roster while I was in hospital to ensure that I was visited everyday. While the hospital was literally just across the road from where we were living and not far from the school, this still required commitment from the girls and the mothers who picked them up.

Life would have been much easier if I had been able to return to Jolimont for my schooling. Kalamunda was a much bigger school and I arrived there wearing big black shoes with orthotics, with funny looking knees and not able to participate in physical activities with no obvious sign of disability apart from the big black shoes and funny knees. I had a young teacher who did her best to follow the directions given to her by the doctors through my mother, but she was clearly bemused by my condition. So it was a bit tough and while I was not bullied, I never really felt comfortable and on reflection probably became a bit tougher and rougher than I had been in order to survive.

The feeling of discomfort continued on into high school. The high school had a student population of fifteen hundred at the time. I did find friendships that were more nurturing and some have continued to this day. But Physical Education lessons were a nightmare. Because of the fickle nature of the disease there were times when I could participate in the lessons and others when I could not. To an outside observer there was no material difference in my appearance and I struggled to explain this to my fellow students and to some of the teaching staff. Compounding this was lack of skill level because of my damaged limbs and lack of practice and experience.

Interestingly for me I was almost rid of the RA when I was pregnant with my first child. I had more flexibility in all my joints than I could remember and for a while this made me determined to find a ‘cure’. At least I thought there must be a cure if something as simple as being pregnant (!) made my symptoms all but disappear. All the doctors seemed to acknowledge that it was not uncommon for this to happen, but did not offer a solution.

And I guess this is the thing with arthritis in my experience, and I am sure the experience of lots of people with lots of different ailments, nothing stays the same. You can roller coaster through the highs of being mobile and pain free one week, to the lows of swollen joints, pain and general malaise the next. In the same way I have learnt that setbacks are just that and do not necessarily mean that life is never going to return to normal. Pain and discomfort can arrive for no apparent reason and then eventually disappear again.

There have been some patterns. Swelling and discomfort seemed to ebb and flow with my menstrual cycle – extra pain and PMT were not a combination to be relished.

Overtime I have recognized a dependency on the support and comfort of doctors. When I was in my mid-teens I was told that in all probability I would grow out of the condition. My body replied with a complete relapse within a few months. I was in my late thirties when Dr Evan Owen died and I definitely had a reaction which did not settle until I found myself under the care of another rheumatologist.

Rheumatoid Arthritis can be an invisible disease. There is often no real physical sign or symptom that non-sufferers can see and therefore inability to do something can often appear to be disinclination or laziness. Last year I had an operation on my right hand to repair damage done over the years by RA. My arm was in a sling and I wore a splint for quite a few months. During this time I got more sympathy than in all the years I have had RA.

People could see that something was wrong and that I had difficulty carrying out normal tasks. While this aspect and the general feeling of malaise that often occurs are difficult for adults, it is much harder for children and teenagers to have to deal with. As adults we often have choice about where we place ourselves in both work and social situations. But children at school often have little choice about what they have to do and with whom.

At age 50 I have continuing discomfort in my hands and knees; I wear orthotics and take a fair cocktail of medication. One of the challenges for me now is that some of my joints are starting to wear out and I have to walk the fine line between keeping fit and active and not bringing these joints to a point of no return. That said, I still regard my self as very fortunate. RA has not really stopped me doing anything I either need or want to do and I have been very fortunate in being married to John for twenty six years and having two lovely children who are now in their late teens and early twenties.

Cathy Cottam September 2009