We’ve all been there: looking for some information about arthritis, and only being able to find information targeted at people much older than us. You might have decided, as I often do, to narrow down the search in the hope of finding something by a peer – by someone just like you.
So you type into the search bar of no particular search engine, ‘juvenile idiopathic arthritis’ knowing that the only people with that condition will either be people like you, people who used to be like you (real grown-ups), or people who will be like you soon enough (children).
But with a search for juvenile idiopathic arthritis comes another key demographic. In fact, I can’t help but feel that sometimes this particular demographic trumps my own: the parents of someone with JIA.
I love parents, don’t get me wrong. Mine have helped me a lot over my life – mainly with my voluminous hair and banter – and I am grateful. I appreciate that a lot of parents will have had a lot of questions when their child or teenager got diagnosed and it’s great that they had answers. Parents will have to put into words what their young child is feeling, and that’s really important.
But what about me: the grown-up JIA warrior? Where are my answers?
I don’t want to read this information for parents. I don’t want to read it, because it deals with parents’ emotions; it’s a difficult read to say the least. I have enough potential guilt that I may have been a disappointment to my friends and family by having JIA, without a leaflet or a website telling me so.
I appreciate that this information isn’t aimed at me and in the early stages parents probably need as much help as we do. It’s just a problem because it is so hard to avoid.
I rarely pick up ‘My Child has JIA’ leaflets, mainly because my child doesn’t have JIA – in fact, my child doesn’t exist which I think is probably its biggest problem. It bugs me, however, when I pick up something which is aimed at me, and then at the back it’s got something for parents tacked on.
Those pesky parents get everywhere. On various information-websites-which-shall-remain-nameless, parents’ information is before our information. That’s the parents of children with JIA, before the people with JIA. No, no, no.
It becomes a choice: vague information about a different medical condition, or crossing an emotional minefield to get accurate information about your medical condition? Is that a fair choice? I mean, I’m the one with the JIA; it’s the rest of my life. Surely a bit of easy-to-come-by self-help is the least I deserve?
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(Any opinions expressed in Collette’s blog are not necessarily shared by Arthur’s Place. Nothing that you read in Collette’s blog constitutes medical advice.)