Natalie's Story

After six months hospitalisation, I was first diagnosed at the age of 2 and have now had Arthritis for approximately 28 years.

Arthritis affects my feet, knees, wrists, fingers, neck, elbows and jaw with the most severely affected parts of my body being my fingers and wrists and feet. To date, four out of five fingers are dislocated on my right hand and two fingers are dislocated on my left. I have been hospitalised approximately 6 times, firstly in 1974 when diagnosed, In 1990 I underwent reconstructive surgery to straighten the toes on my right foot and swore I would never return as planned to have my other foot operated on. Two years later I returned, and whilst the level of pain and discomfort is still prevalent today, the degree of discomfort has been reduced as a result of the operations. In 1996 I also spent a few days in hospital having three syringes full of fluid removed from my left kneee and two from my right (enabling me to walk in comfort again).

From when I was first diagnosed up until approx 15, apart from trialing a few drugs, the only regular form of medication that I was on was 8 asprin a day. Neither my pediatrician or parents were keen to place me on steroids for fear of side affects and interference with growth. The degeneration of my disease was gradual from 5 to about 13 years of age, and after a brief period of remission, at the age of 15 my condition deteriated again. It was during this later period that I changed doctors and my rheumatologist started prescribing the first of a series of non steriodal anti inflamatories (namely - Clinoral, Plaquenil, Voltaren, Feldene, Celebrex) . It was a process of trial and error until I found suitable drugs with limited side affects. My current medication (Orudis) seems to be relatively though not completely effective, I have to take a drug called Somac to counter act the reflux and heartburn. As with all the drugs I have been on over the past 15 years, they do have a limited shelf life and after a period of 1 or 2 years, I tend to find their effectiveness diminishes. I hate to think of the damage that drugs have done to my body over the years, but being mobile and able to function as a member of society has been my number one priority and if taking drugs enables me to continue down this path then, then so be it I will continue to administer the medications.

The reality is that I have never known what life without arthritis is like. My memory of what I went through in the early years is very limited and in many instances, I have had to rely on information relayed to me by my parents. It was difficult learning to adjust to "being different" as a child and cope with pain, inflammation and joint dislocation. I detested those visits to my paediatrician as he would manipulate my joints in a way that caused pain. In the earlier years I never used to look at my doctor, I would cover my eyes with my arm and would spit at him every time he touched me. As a child, it was difficult not participating in events that were pysically challenging. I still remember instances such as a ballet concert on stage, where I had to exit from the group when they all knelt down and rejoining the stage later when everyone was standing again, simply because my knees could not take the pressure.

As a teenager my method of coping with my disease was to pretend I didn't have this condition, shut out memories of bad times and focus on the positive and good experiences in my life. You learn not to complain about the pain and frustration you go through not being able to live a normal life, because hey no mater how much you yell and scream or sware, venting your anger and frustration doesn't cure your condition. The teenage years were amongst the most difficult for me, during these years I had to adjust to being unable to participate in certain sports that I loved, such as gymnastics and ballet, I became very self conscious about the way I walked, what my feet and hands looked like and found it very difficult to trust or get close to members of the opposite sex. I still struggle with the issue of self consciousness today.

It is so frustrating knowing that this disease controls my life and no matter how much I exercise, the number of pills I take to control the pain and inflammation, the dietary and other modifications to my lifestyle that I have had to make over the years that my condition continues to degenerate. It is difficult to understand why I am forced to suffer with a condition that I did not choose to have. As with other sufferers everyday life is hard work. I struugle when typing with three fingers, especially when in pain, find it difficult to open and close doors, can't open bottles, take hours to eat and can't cut food. The list is endless.....

I am count myself lucky that I am currently able to work full time, earn an income in order to support my condition. No matter how much this damn condition slows me down or inhibits me, I generally attempt to find a way around my limitations. I have been able to travel quite extensively around the world (often solo and at my own pace). Travelling has allowed me to discover how far I can push the boundaries and given me the confidence and determination that I continue to apply in my life. Scholatically, I have finished high school, completed studies at university, TAFE and am currently studying finance at a private college. I am also now a lot more mobile having obtained my licence in 1999. Driving has given me a lot of freedom and independence. Setting goals for myself and meeting these goals helps me come to terms with the depressive nature of this condition. In the past I have tended to benchmark myself against others without this condition, but now I am more focused on what is realistically achievable for me and in coming to terms with this, I have been able to move forward.

Today I have gradually become more in touch with my condition. I have recently made contact with other sufferers and as a result, we have formed a young adults with Arthritis support group (NSWYAWA). Talking with others that understand what you are going through has been a real positive in my life this year.

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The information provided on this site should not replace the advice and guidance of your own health-care providers. All material is provided for educational and informational purposes only and is the opinion of the authors. Please check with your doctor before making any changes to your treatment.

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