The impact of rheumatic diseases
on family life
Winter 2009: Paul Quest
My wife and I have been married for 48 years but known each other for over sixty years. She was diagnosed with RA in December 1998. Both of us were nearing the end of our careers in Education. She is under the care of the Rheumatology Centre in Bristol Royal infirmary. As for our age then let’s say that we have passed our biblical sell by date.
When my wife was diagnosed the initial impact was slight. There was a calm acceptance of the diagnosis. She had a few aches and pains. Our knowledge of the disease was based upon popular stereotypes, of severely disabled people in wheelchairs so it was somewhat reassuring when she came home from her first consultation and told me that the doctor had told her ‘Don’t worry only about only 5% end up in a wheel chair’. Ignorance is a strong word, but we were ignorant of the real problems of the illness. In those days we had little knowledge of the internet. The full impact of the illness came abruptly.
A few weeks later we were at a New Year’s Eve party. It was Enid’s turn to drive so that I could have a drink. Suddenly about halfway through the evening I became aware of the fact that she was unwell. Not only were her hands swollen and very stiff, she was experiencing what we now know is the extreme fatigue that patients can experience. We were miles from home in an extremely isolated farmhouse and I was probably over the alcohol limit. This created a problem for us as she could not change gear, and could barely hold the steering wheel. We drove home with me changing gear and helping to steer the car from the opposite side.
Suddenly the nature of the illness hit us. In order to bring the disease under control Enid was hospitalized. We swung from calm acceptance to one of extreme anxiety which brought with it for me a sense of powerlessness. There was nothing I could do. It was a very stressful and disturbing period.
There followed a period of turbulence. Various treatments were tried with limited success. We swung from periods of relative calm to considerable anxiety. For me there was the distress of watching Enid suffering from the symptoms of RA; pain, lack of mobility and fatigue. We had always been very active, enjoyed walking, travelling abroad, we had a mobile home, but could not use it. We had made plans for retirement all of which had to be placed on hold.
Once again I faced the problem of finding a balance, how to give support without interfering, trying to protect but not be overprotective, which was vigorously resented by Enid. I have lost count of the times that Enid has told me to “stop fussing”. I was struggling with how to respond. Often I had a sense of helplessness which at times expressed itself in impatience. A key skill was learning to recognize the unsaid. Knowing when to intervene and when to stand back and encourage independence. I have now learnt how to decode the signals.
There were moments of extreme anxiety, but also times when tears of frustration and anger turned to wonderful moments of laughter as we triumphed over difficulties. Having a shared sense of overcoming problems followed by periods of relative calm and low disease activity. I recall the time when the social services gave us an inflatable bath seat. It was like an octopus and before long we were collapsing in laughter as we tried to assemble it. A key skill was learning to recognize the unsaid.
Life settled down in 2003 when Enid was given anti-TNF treatment. For three years life was more predictable. Although there were occasional flare ups but nothing like the previous ones. Life was almost normal.
A very important factor has been Enid’s determination to get involved in her care. She became very involved in her local clinic and through this the Omeract project (Outcome Measures in Rheumatoid Arthritis Clinical Trials). Knowing more about the illness and understanding it has given her encouragement and empowerment. This has helped me enormously.
Some of the concern and anxiety has been reduced by the fact that Enid is under the care of a hospital that has a direct access clinic. The underpinning support that this provides is invaluable. There was less concern even though during this period End fell and broke a hip. We were lulled into a false sense of security.
Anti -therapy treatment was so good, but caused so much concern when it went wrong. She developed an infection around the spine that was life threatening. For the first time I faced the possibility of losing Enid and I experienced considerable anxiety. It was like sitting on the touchlines watching a battle take place without being able to control the outcomes. I had an enormous sense of powerlessness. During this time I had very little support. Looking back I realise that I went through a number of avoidance strategies. I recall decorating the hall and taking considerable risks climbing ladders on my own. Recovery was slow. She spent several weeks in hospital. But it did change our outlook on life. It forced me to take a hard look at my own feelings.
I would like to think that I have been a help in developing a sensible and even handed approach. I don’t panic quite so much, I am more patient now, I think. Enid has just recommenced anti- TNF treatment.
- What are the problems that we jointly face?
- Inability to perform small tasks.
- Knowing that there is no cure.
- Accepting the loss of independence.
- Accepting restrictions without becoming despondent
- Willingness on Enid’s part to accept help coupled with less “fussing” on my part.
- Worrying about the adverse effects of medication.
Greater interdependence has strengthened our relationship. Taking life as it comes, making the most of each day.
