Children
can be empowered too. You can do this by helping them to see themselves
not as ill children all of the time even though they do have problems with
arthritis. You can encourage them to manage their own exercise programmes
for example, and help them to understand they are only patients when at a
medical session and not when at home, at school or playing with friends.
There
will be a whole range of questions to be asked if you want to be in
control, along the lines of ‘how do we find help?, ‘who will help
us?’, ‘how do we know what we need?’ and ‘how can we help
ourselves?’ We may need to find someone who will work alongside us while
we sort out the many practical and emotional challenges which JIA brings,
particularly at the point of diagnosis. There are other agencies who may
have a duty to help — you may need to find out who they are and what
they can do.
Ask
around, find out what is available, like your local Citizens Advice Bureau
(see phonebook). It helps to find someone who can support you through the
maze, who can perhaps help with suggestions about who to contact and what
you could say to them. You may want help with practicalities such as
drafting letters which you can then send off yourself or which could be
typed up so all you need do is to sign them. Find someone who can be a
friend, who knows the ropes, perhaps someone who has been there themselves
and knows what it feels like.
We
all need encouragement to make the effort to try out different ways of
approaching problems with the various authorities and other organisations
concerned. Sometimes it is a help to rehearse with someone else in advance
what you are going to say.
Linking
up with others who share your concerns is important. Those linked together
by a common cause are often stronger as they can present a united front.
In
talking through problems, it helps to identify the major issues. If one
gets too involved in trivial matters,
these
can detract from the major issues. It is often better to concentrate on
the important things. This avoids the feeling that we are always in
conflict with ‘authority’ in some way. A reputation for conflict often
means that people cease listening to what we have to say.
