Dear Sally,
I empathise with your fears and guilt - what a ghastly time for you all.
My daughter started sacro-iliac pain in her final year at drama school (age 20yrs) which was a real problem for her dance and physical theatre as she needed crutches for some time. She was diagnosed relatively quickly ( 6-9months) with inflammatory arthritis. Her consultant doesn't want to pigeon hole her any more than that at the moment as those joints were the only ones affected.
She has watched her aunt, my younger sister, suffer horribly from psoriatic arthritis for the previous 8 years and we were all devasted. At the time she was starting treatment, I started my RA which has unfortuntely been difficult to control, so she has also recently seen me falling apart physically and coping with dreadful drug side effects.
Luckily her treatment of 2 steriod injections into the joints under CT scan, although traumatic, have been successful and as long as she is careful she has some remission at the moment. I'm sure being young and fit has helped her.
As a family we are riddled with autoimmune disease, with my son also affected and we all have more than one problem, but we can't change who we are and how we are made and are not responsible for what has happened.
I don't need to spell out what it means for a young adult to cope with the disease, but once we had worked through the inevitable guilt and grief there are actually some positives!
We are our own support group, and can give immediate time and listening.
We have our own shorthand and don't need lengthy explanations about how we are feeling, in fact we are intuitive to each others needs.
Our partners also support each other.
My daughter can see there are good and bad patches which really helped when she was bad, because she knew it could and did get better.
We have realisitic expectations of each other and gave each other a good talking to when neccessary!
We share information, tips, laughs and tears - she doesn't have to learn the hard way - we've been there before.
I'm sure you get the gist!
Luckily both my sister and I have been recently affected so have had the benefit of modern drug regimes and hopefully shouldn't ever have to suffer the extreme disability of years ago. That has helped my daughter as well and she is busy planning her wedding in 2011, persuing her acting career and looking forward to starting a family in a few years. She has to really watch what part time student jobs she has as she can't stand for too long.
Sally, you are in a priveleged and unique position to support your daughter. There are SO many different types of inflammatory arthritis and unfortunately no-one will be able to see into her future yet, but you can give her understanding, wisdom, practical advice, courage and love.
I do hope you get lots of support too.
love and hugs to you both
Alison
