Table 2 Blog reflections upon arthritis and personal identity

a. Early and late diagnosis:

 I was diagnosed when I was tiny so I don’t know any different. in a way I think it would be weird to not have it but that’s probably since I have grown up with it being part of my life, but not letting it rule it. [Female, 16 years old]

 I used to do a lot of running, and when I was diagnosed I was unable to do it. I do at times miss it, and I do feel that people saw me differently. I only say this because I was known as a runner, and when I was unable to run anymore I was almost isolated from the rest of my peers. [Female, 16 years old]

 My Daughter has never really known any different in her life as she was diagnosed with arthritis at such an early age, I suppose that has helped in a way really as she just gets on with things and knows her limitations and when to stop. As she has approached her teenager years her arthritis does get her down and when her friends are doing something that she knows will tire her out or that she just could not do she does go quite moody and frustrated. [Parent]

b. Effects upon forming identities:

  Does arthritis affect my identity? I don’t really think it does me still can do what every other kid can do! I still do all my hobbies e.g. Judo, swimming and dance. My life is pretty ordinary if you take away all the injection and blood tests…. [Male, 11 years old]

  I am a very sociable person when I am happy on a good day, however if I am caught on a bad day with regards to my arthritis and my mood, then I can be the complete opposite. [Female, 16 years old]

c. Impact in adolescence:

  I am fifteen years of age and have had arthritis most of my life, I was only about 2 years of age when my parents were told that I had the disease, I suppose when I was younger I sort of just got on with it, but as a teenager it can effect me in a variety of ways. [Female, 15 years old]

  We spent the first 10 or 11 years hoping that she’d grow out of it at puberty only for her to suffer more around that time. [Parent]

  Our daughter takes her methetraxate on Friday evenings. By Saturday afternoon she feels sick and is quite down. This continues until around Tuesday where she perks up and becomes her old self. Still, is this the effect if the meds or her mental state or just teenage angst? [parent]

d. A positive force:

  but im glad that it happened in away because i made a better group of friends and the(y) did not understand at first, but they were willing to and now they are my greatest friends. [Male, 15 years old]

  If i could change myself eg: not having arthritus i dont know if i would because it has made me a stronger person… and i have faced some of my fears like operations and needles and im proud of my self for that…. [Female, 13 years old]

e. Facing the future:

  Today I am not feeling too good. My arthritis is really playing up on me today. I feel really down and tired. Mainly grumpy and unsociable. It’s on days like this when I ask myself, ‘How am I going to cope with working in the working world when I can’t even cope with just going to college?’ [Female, 16 years old]

  “as a mother, at the moment, I’m feeling very worry about what the future holds for my son regarding his arthritis. NextSeptember he is moving tosecondaryschool, thatnormallywill be an scary time for any mother but when your child has a cronicalillnessthe idea of him growing without knowing how his condition is going to affect him is veryscary. What happens if he doesn’t take the medication? I just wish it was more information for parents on how to deal with all this worries! I also feel afraid about the moment when he leaves the doctors in the children hospital. Will I be able to trust any other doctor with him?” [Parent]