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Fatherhood and arthritis

Bryan Scatchard, a new father with rheumatoid arthritis, from Lincolnshire, UK, talked to Shanta Everington about the joys and challenges of parenthood.

When I started to experience unexplained pain and tiredness in January 2006, aged 39, the doctors were baffled. Nobody knew what was wrong with me. It took six months to get a diagnosis of adult onset Stills disease, a rare form of rheumatoid arthritis, the exact cause of which is not known.

People like me

My wife and I had just got married and the diagnosis came as a huge shock to us both. I had always been healthy and kept myself fit by going to the gym. I thought that arthritis was something that affected older people, not people like me – a six foot four ex-rugby player.

At first, I found it difficult to come to terms with the diagnosis. I felt very alone and isolated, particularly as Stills disease is so rare and unusual.

It can be hard for people to understand that I have arthritis, as outwardly I look fine, but the pain can be very severe some days.

The main issues are tiredness and joint pain. My arms and legs are bad but my hands and elbows are worse. Everyday things that I took for granted like swimming or fixing a leaky tap became impossible to do at first.

With hand therapy and gizmos from the occupational therapy department at my local hospital, I was able to overcome some of these problems and find a new sort of normal. Wrist and hand supports have made a big difference. We have changed all the main taps in the house to quarter-turn taps as I was struggling to turn the normal ones.

A basic human right

I was determined not to let the disease beat me. Having just married, my wife and I wanted children. Being able to start a family is a basic human right and not something that I was about to give up on.

In the six months preceding the diagnosis, my wife and I feared the worst. We thought it was cancer.

Having come through the cancer scare, we were even more resolute about starting a family. Having arthritis is bad, but I knew it was something that I could live with. I was not prepared to become a victim to the illness and I certainly didn’t want my wife to suffer. I knew we had too much to give.

My wife became pregnant in October 2006, four months after my diagnosis, and our daughter Martha was born on 1 July 2007.

Joys and challenges

A big challenge for me as a new father is the tiredness that comes with my arthritis. My wife is getting up all hours of the night to breastfeed but if I’ve taken painkillers, I’m just not there. She is bearing the brunt of it and it’s difficult for us both. She does all the bathing because I have not got the strength in my hands. If Martha wriggles, I am worried that I might drop her. She is too delicate, fragile and beautiful to take that chance. My wife will pass Martha over to me to hold.

At four months, Martha weighs 12 pounds and I’m struggling to hold her, which I find embarrassing, distressing and frustrating. My arthritis also limits us getting around, as I don’t have much energy.

We chose a lightweight easy-to-use buggy to make things easier. I can also use a baby carrier if someone lifts Martha in and out of it. The joy of having my daughter close to me in the sling compensates for the pain of holding her.

I have friends who have toddlers. I watch the other dads playing rough and tumble, holding the kids upside down and it saddens me because I know these are things I won’t be able to do. But I get involved as much as I can. For example, I always give Martha her evening feed, despite the fact that holding a static hand position for 20 minutes can be quite painful.

At four months, Martha is starting to show an interest in the world. She is watching us and cooing and interacting, which is wonderful.

One day at a time

My advice to other people with arthritis who want children is to go for it! If I had to make that choice again, I wouldn’t change it for the world. I want to join in with family life as much as possible and I am still in the process of adapting to the challenges of parenting with arthritis. It’s early days and we don’t really know what the future will bring.

I currently work full time and I’m exhausted by the weekend. My wife is currently on maternity leave from her teaching job and will return to work when Martha is six months old.

I don’t know where the disease is going so we take things one day at a time as a family. I’ve got to have surgery on my hands in a year or so. We will cross that bridge when we come to it.

There is always a way of coping. Sometimes, it’s a case of being able to ask for help. My family has had experience of adapting to disability and has been a great support. My father had multiple sclerosis and was disabled for many years until his death at age 64, and my eldest sister lost a leg due to diabetes. If we need to get outside help at some stage in the future then we will do, but at the moment we are just taking it one step at a time.

Useful organisations

Arthritis Care is a user-led organisation for people with all forms of arthritis. Bryan is featured in the Arthritis Care awareness-raising campaign, People Like Us. Contact Arthritis Care for information about its services.

Tel: 0845 600 6868 (24 hours)

E-mail: info@arthritiscare.org.uk
www.arthritiscare.org.uk

Arthritis Research Campaign produces a booklet called Pregnancy and arthritis which describes the effect of pregnancy on a woman’s arthritis and the effect of arthritis on pregnancy. The booklet also addresses issues about medication for both partners when trying for a baby, and the chances of passing arthritis onto a child.
Tel: 0870 850 5000
E-mail: info@arc.org.uk
www.arc.org.uk

DPPI publishes a range of practical guides, which may be helpful to new parents with arthritis including Bathing your child, Choosing cots and beds and Nappy changing and dressing. They are free to disabled parents and £6 to others. Available from DPPI information service.

First published DPPI Journal, Issue 61: Spring 2008

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