Tuesday, August 13, 2013

Coming to Terms With Crippling Arthritis


The first hurdle is getting past the shock of hearing that diagnosis. Still today, when medical science has wrought huge improvements in the treatment and management of RA, the news comes as a shock. Even the doctors who must deliver that news are burdened by the knowledge of what lies ahead for their patients.

I will never forget seeing the expression on my rheumatologist's face one day when I asked what was troubling him and got this reply: 'The young man who left before you - I've just had to diagnose him.' Another day, I asked how he felt about a little boy out in the waiting room, and the experienced specialist told me: 'It's better with children, in a way. They've never known what it's like without RA. They accept it more easily than adults.'

  • Let me repeat here the Good News: the new medications, used early and in the correct dosage, have been proved to 'stop RA in its tracks.' That is to say, the destructive progression of the disease is slowed, although nobody in Medicine talks of a 'cure.' At least, not yet.

  • Research goes on, but funding is not so easily raised for:

  • a disease that is still seen as 'only affecting old people'

  • one which can't help but trigger the public's 'Compassion Fatigue' because of

  • its stop-and-start cycle of remission and relapse,combined with

  • its confusing jumble of symptoms, and

  • its lack of any clear prediction of a limit - the 'sentence length' a judge would hand out to the condemned in a court of law.

We, who know this condition at first hand, or through caring for someone we love who is afflicted, can tell our own stories of coping with it, and help others to understand it more. I've been persuaded to 'come out' for that reason so here's my personal recollection:

Like anyone who has been there, I vividly remember the day I first heard that news. As an energetic 25-year-old mother, actively involved with the community affairs of our small country town, the diagnosis shocked me. My invariable reaction to a crisis situation set in. Under cover of an icy-cool, businesslike manner, I held down the dread that I feared would overwhelm me if I let it show. In a brisk way, I asked: 'Well, how do we fix it?'

The doctor was very young, a new graduate, acting as locum for the regular GP, but he wasn't fooled. Rising from his chair, he walked around his desk to perch on the edge of it as he stared gravely at me. In all the years that followed, I came to know he was the only doctor who told me the unvarnished truth. What he said that day was: 'We can give you medications to deal with inflammation and help with the pain. But in reality, there's not much we can do until you are crippled. Then, surgery comes into it.'

My only clear memory, after leaving that office, was of sitting on the kitchen stool back home, wondering how I could break the news to my husband. He knew about the beloved grandmother I used to visit after she became confined to bed with this thing the doctors called RA. Through the devoted care of her younger daughter, my aunty Dorothy and her husband, my uncle Ranald, my grandmother survived for eight years. All of them lived from that bed.

  • For anyone newly diagnosed, there are a number of issues: shock, fear, dread of future disablity and incapacitation.

Everyone will deal with this first stage according to their innate character, and each of us will do it differently. If we're lucky enough, we may have good friends and family standing by as we come to terms with what's happened. Our expectations of life, any plans we had made, are now changed, forever. But we have to do that part of it - the coming to terms - on our own.

Once again, my hands have reached their limit of endurance at the keyboard, so I ask for you to excuse me until next time, when I will pass along some of the strategies that have worked best for me - and I'm sure will help you, too - in dealing with Rheumatoid Arthritis.

No comments:

Post a Comment