Joining a support group doesn’t make you a weak person

My story about growing up with arthritis and joining a support group, which I now lead.

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. I even went overseas and lived in Cornwall for 6 months and a couple of years later moved out of home and lived by myself.

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 20s 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. During these years, in 1994, I met my wonderful future husband, Neil Creek. In 2001 we got married.

Many years on, my mother-in-law joined Arthritis Vic on behalf 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, in about 2007 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.

My new rheumatologist turned out to be wonderful, putting me on a new drug trial (Tociluzumab) which was fantastic. I was on the trial for nearly 3 years until I got a knee infection which meant I had to be removed from the trial.

After attending many YWASG gatherings, I started involving myself in the group more and more, helping design and print some brochures and magnets and also design their website, with the help of my husband, Neil Creek. In 2009 I felt the need for the group to evolve a bit more and really saw the need for members to come together on a more regular basis. So I took it upon myself and organised monthly meetings at a community centre for members to come each month for mutual support. Shortly after this I took over leading the group as the other ladies who had been doing it for many years felt like a break. Bringing young women together who suffer with arthritis and seeing the joy and benefit they get out of the group is a very rewarding experience. It has made me grow and respect “support groups” so much.

So summing up. My advice for anyone who is wondering about joining a support group? They are not as scary as you think! However, do it in your own time. I believe it is important to be independent to an extent 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 what’s going on in my life. Knowing that I may be able to help someone, even in a small way, just by talking to them is a great feeling. Sometimes when you help others you help yourself at the same time.

2 Responses to “Joining a support group doesn’t make you a weak person”

  1. Nice post… now we need a “what kind of blogger are you?” quiz so I can figure out what I am. :)

  2. Quite insightful….looking forward to visiting again.|

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