For some reason doctors seem to say thisstuff far more about kids. It really gets on my nerves. I HAVE had a doctor (a pediaitrican, interestingly) say the same thing about me - he told me that I had chosen to have thischronic illness as my way of optiong out of having to achieve in life to the best of my abilities. "YOu're an intelligent woman," he told me, "and tis illness is your way of opting out of life's responsibilities."
He was way wrong - I later put it in a letter to him that by kis logic, my preferred sexual position would be standing up in a hammock, because living like this is NOT easy in any way. I have more hurdles to overcome, not fewer.
HOWEVER - in my obsefvations of chronically ill people, there IS a problem with kids and with husbands, when they get catered tobecause of their illness. It is what we do for family members who become acutely ill - we care for tem. The difference, when the condition becomeschronic - you can no longer afford the luxury of lying around in bed because life is moving on and not waiting for you. You are still unwell but you have to drag yourself out of bed and go chasing off after Life, as fast as you can manage it. Your objectives may have to change - you can perhaps no longer be an Olympic sprinter through life, but can use other aids to help you keep up and catch up, or find something else you can do, within your limitations. You have to LIVe while you're waiting to recover. You can't just put a "pause" on your life, you have Occupational Therapist (OT) get on with doing the best you can with what you've got left.
So while I see this "secondary gain" rubbish as a handy cop-out by some doctors, they get away with it because, in some cases, there is some truth.
To shut these idiots up, the person needs to get on with living. Rest when your body says you must, but at other times - get up out of bed and DO something. If sunlight causes headaches, then go for a walk after dark. keep studying, keep extending the mind. Work the mind. Find courses which, if necessary, can be done part-time or by correspondence.
Make a large poster to hang on the wall. Inscribe the words "SOLDIER ON". That has to become the motto.
THat is not to say she isn't really ill and needing to rest at times. She should be able to rest when she needsto, without guilt. But she needs a reason to get up and get moving, because otherwise inertia creeps in, especially if you're there to provide for her every need.
I had to soldier on because I am a mother and I haven't got the luxury of having someone to wait on me hand and foot. Kids don't understand when mummy is too ill to get dinner. They just scream for food. I HAD to get up and feed the kids (and do other things) and found ways to manage. Meanwhile I was meeting people who DID have the luxury of resting whenever they wanted to. Who was functioning better? I was. I was more tired, in more pain, but I was achieving more. Long-term, who had the better prognosis? Again, I think I did, because if/when I had 'good' days and was able to enjoy life a bit more, I was ahead of the game because I had already been doing more and felt better about myself emotionally, for what I could achieve. I had confidence in my abilities.
Someone who is stricken with a chronic illness initally wnats to go to bed and rest. It's natural. For a lot of conditions, it is the best thing. Initially. But if you stay in bed and wait until you get better, you may lose ytouch with hoe "healthy' feels, and not recognise improvement as it sneaks up on you. And even if you don't miss it - let's say 2 years passes and you're still no better. What could you have managed, in those 2 years? Let's say you recover at the 2 year mark. If you have been in bed for 2 years, you need rehab to get your body awake and moving again.
"Secondary gain" is, I think, over-rated in terms of just how much people use a situation. You DO need to keep the issue in mind, but only peripherally. As carer, all you need to do is encourage your child to do what she can each day, within her limitations. Give her hope in a future by ensuring she keeps as active as she can, mentally and physically. Her rehabilitation should start now. Don't wait until she is declared well.
Marg
