Table 3 Blog reflections upon medication (including medication management) and personal identity

a. Effect of medication upon identity

  It hasn’t affected the way i value myself; i still think the same of myself that i used to. My illness doesn’t really affect me apart from when i have to take my medication other than that i can’t feel it. I don’t think any less of myself because why should i???? Just because i have an illness...... I think that is just stupid. I am perfectly normal and i think that i am the same person i was before i got diagnosed. I think no less of myself. [Female, 13 years old]

b. Side effects

  The medication I have can give me a weird reaction, and it makes me put weight on more easily, so I am used to being bullied by people calling me ‘chubby cheeks’ and other mean stuff, but my friends have always helped with bullies, by making me feel better, and getting me through harsh comments. [Female, 13 years old]

  The doctors want me to go on another medicine as well as although the embrel does make my joints feel better im still in alot of pain and can’t walk far, however i feel a bit nervous to go on it as it can have alot of side affects just like any medicine can. Therefore i have to think about what benefits me more and i know that this medicine will be helpful. [Female, 15 years old]

  Had to give the twice weekly injection - never a very nice time, it takes quite a while for this procedure as she is always very nervous that it will hurt, even though she has had more injections in her lifethan I have had in the whole of mine giving her her injection is never easy.[parent]

c. Weighing up the benefits vs the disruption

  To be honest, I HATE taking medication everyday. I know that in the long run, it could help me with my symptoms, however it isn’t nice having to take them all the same. (Female, 16 years old)

  Taking medication is not the easiest thing in the world, it gets quite annoying knowing when to take it, but i don’t mind as long as it makes me better. [Male, 15 years old]

  ‘…I know without it I could become ill again and I don’t want to end up in hospital again.’ [Female, 13 years old]

d. Medication management

  To be honest, there aren’t that many positives when it comes to taking medication. I know that I have said this many times, but I feel that the main positive that has come from taking medication is having a sense of independence. I absolutely hate taking medication, but I cannot deny that it has given me an insight of taking responsibility for things. (Female, 16 years old)

  I kind of enjoy being in charge of my medication because sometimes I feel like a pharmacist??? [Female, 13 years old]

  Now I’m kinda like an expert on medication i know all the doses and names of my medications. [Female, 13 years old]

  Do i get enough help from my friends and family??? Yes i do everyone helps me in every way they can although i don’t need a lot of help. My friends don’t really need to help however they do sometimes ask have you had your medication? I am in charge of my medication therefore i am responsible for it. My mother helps by getting my prescription and collecting the medication from the chemist as i am not aloud because i am to young. [Female, 13 years old]

  I feel really pleased that my daughter has taken full responsibility for taking her medication, there have only been a few times when she has forgotten to take it [parent}

  The thought of our son been in control of the medication is a very frightening thought. As parents we know that the moment will have to arrive so he becomes responsible of his well being and independent but never the less still a worry because when you are in control your mind is at rest that you are doing it right but when you have to trustsome else with the medication becomes another thing for your head to worry about!!! [parent]