“Wire cage was placed over me as I slept. I could not even bear the weight of my blankets.”

By Elaine Molloy McEntee

I was just a baby (18 months old) when juvenile rheumatoid arthritis entered my life. 39 years and six joint operations later, it is still with me. I can honestly say I’ve come through a lot but it is pride that I feel more than anything else.

I spent most of my childhood in Temple Street and the Mater Hospital attending the lovely Dr. Barry at the rheumatology clinic and in the CRC Clontarf. When I first met him, I was so frightened and clung onto my mother. I didn’t want anyone examining me.

It might sound silly but as a child I remember feeling quite embarrassed about having arthritis and I didn’t ever talk about it. I was never really able to take part in the normal activities that my classmates would’ve taken part in and I’d miss school from time to time. My friends just thought I had problems with my legs.

The pain of it sometimes was so horrendous that it completely took over and stopped me from doing anything. Even having blankets over my legs was sometimes too painful. My legs couldn’t take the pressure of the weight of them. I remember being in hospital and the nurses putting wire cages over my legs and then the blankets on top, so that they would have to bear the weight. It was awful.

I remember when I was a teenager I was going out to a nightclub with friends but I’d been going through quite a bad flare and I needed a walking stick to walk. Some of the girls suggested that I leave the walking stick behind. They said it sort of casually but I knew they were embarrassed by me. That was very hard to deal with. Some of those people I have had to leave behind but other friends have stuck with me along the way. It was only really in my late twenties-early thirties that I began to really talk openly about my arthritis and how it affected me because up until that point I think I was just focused on fitting in and trying to be just a normal person.

Since then I have had three hip replacements, one shoulder and two hands done. The right shoulder definitely took the longest to recover from. It was six or seven years before I had full mobility back in it. Recovery after surgery was incredibly tough and there were certainly times that I felt a lot of anger and despair about why this had happened to me. You definitely have your dark days with arthritis even though I try to be as positive as possible. I think that’s really important; that you make the most of yourself no matter what. You can’t let your arthritis get on top of you and I try my best to make the most of myself, in every aspect of my life. You need to do that even for your own self-respect.

I always wished that Arthritis Ireland had been around when I was a child because I always felt I was living alone with juvenile arthritis, and today you see that there is great support for kids where they get to meet each other. As a member of Arthritis Ireland for a number of years, I found just reading stories from others to be a great support. You pick up the paper and you see there is a woman who is similar in age to you, going through something similar. It makes you feel that you’re not alone and that’s so important. I’m also grateful for all the support I’ve received from the doctors and health professionals over the years, especially in Cappagh Hospital where they are just always there for you. They have been brilliant.

I’m now 41 this year and I feel very proud of all I have achieved. I still have my tough days as well as my good days and I think that is always going to be the way when you have arthritis. I’m so grateful to have had the support I did along the way and I am delighted that today there is even so much more support available through Arthritis Ireland for kids and young adults with arthritis.