After being diagnosed with juvenile rheumatoid arthritis when I was 12 years old, I didn’t realise what an impact the disease would have on my teenage years and more so, that it would be a life long condition I would have to deal with.
Being an independent and positive natured person, I learnt to deal with my condition in my own way. Of course my family were there every step of the way and that was enough for me then. Having to go to school each day was a good thing, it kept me busy and active. My school friends found it difficult to understand what I was going through and I did not talk much about it during school. It was like a secret illness. Even though my symptoms were obvious to everyone, not may people asked, they just accepted it, and so did I.
After finishing high school I started working as a graphic designer and that was a busy time. I loved it and found that now I was getting older, my colleagues understood me and I could talk about it more easily. My condition was ingrained into my daily life and I found ways of doing things to make it easier. I was independent.
Having one or two relationships was also a confidence boosting thing, it boosted my self-esteem. I felt good and my life was ticking along.
During my mid 20’s my joints started giving me lots of pain and over a four year period I underwent two knee replacements and two hip replacements. The first operation was a scary experience, the following two were much easier and by the fourth I was bossing doctors and nurses around!
These replacements made my daily life much easier and I was still my confident self, always being told “you are so positive” and “you are so brave”. I didn’t need any help from anyone. My arthritis was not going to “take over”. I felt so confident with how I conducted myself that I was encouraged to enrol in a self-help management leader course, run by Arthritis Vic. I had experienced so much and thought I could help others. The course was not as easy as I thought it would be and actually helped me more than I thought.
Years passed and I was still feeling independent, living by myself and eventually meeting my future husband. My mother-in-law even joined Arthritis Vic because of me, thinking I may get some benefit from the newsletters. So I always knew Arthritis Vic was there, but I still had the feeling that if I let myself be vulnerable and mix with other arthritis sufferers, it would “break” the confidence bubble I had been living in all this time. I did not want to see people worse off than me, people that I might be like one day, people complaining about pain.
Then, about 2 years ago my mother-in-law showed me an article about the “Young Women’s Arthritis Support Group” (YWASG). At the time I was not very happy with my specialists, was not moving ahead in my treatment and my arthritis was not great. I thought, maybe I should call them, who knows what may come of it. So I did. I spoke to Sue and it was amazing. She asked me about my condition and it felt wonderful to have someone understand exactly what I was about. I got off the phone feeling really positive and excited about meeting some of the other ladies from the group. I met up with them a month later at a restaurant and it was a great experience. I could ask them about their conditions and talk about the little intricacies of having arthritis; the funny day-to-day tasks we all find hard, the medications they were taking and the specialists they were seeing. I could see they were on top of their treatment, so I got a recommendation to a new rheumatologist.
I arrived home and my husband could see I was happy. I was bursting to tell him how it went.
I had survived my first support group! I was not depressed or negative after being around these people, I was humbled and excited about the future. They were lovely ladies, each with their own unique story, and it was nice to share mine with them too.(remove comma)
My new rheumatologist turned out to be wonderful, putting me on a new drug trial which has been fantastic. I am still involved with YWASG, getting together with the women every few months and also helping design the YWASG website, which we hope will turn into a wonderful community where women can come to chat with others about their life.
So, my advice for anyone who is wondering about joining a support group? They are not as scary as you think! Do it in your own time. I believe it is important to be independent and a support group may not be something you will ever need. I don’t ‘need’ YWASG, but it is very nice to be part of a group where I can meet new people and share my life experiences. Knowing that I may be able to help someone, even in a small way, just by talking to them is a great feeling.