Until writing this particular column, there had been an aspect of scleroderma that I still had not managed to come to any place of peace with since my diagnosis five years ago. It tormented me terribly, particularly when I had new results coming in from my regular tests, or had a review appointment scheduled with my rheumatologist.
It has been the question of my prognosis.
How many days months or years is scleroderma going to steal from me? I had thought a great deal about this, but I remained torn. I wasn’t sure if I should even ask the question, or if I should choose to remain blissfully unaware. Did the doctors have the answer? And what will I do if I ask and don’t like the answer? Once you’ve heard something you cannot un-hear it.
Some days, I felt that I should just stay focused on what I had accomplished that day, and be thankful for my small achievements. Other days, I’d notice a new symptom. Next thing, I’d find myself searching the internet relentlessly until I was exhausted and overwhelmed with information. Almost every time I’d have drafted an email to my rheumatologist begging her to test me for several complications I probably didn’t even have, convinced scleroderma was sneaking around inside of me, finding new ways to rob me of more time. I didn’t end up sending these emails most of the time, for fear she would have found me to be slightly paranoid (although I think that in reality she would have realized that I’m just really frightened).
Scleroderma is rare, and as a consequence there is less research and information about it than is generally available for more common diseases. Recently, when I dared to ask vague questions about a general prognosis, my team of specialists were very wary to talk about what to expect long term. It seems they actually don’t really know clearly what might happen with my scleroderma. “Every case is different,” they told me. It must be very tiring to be assigned the role of God by their patients, and questioned accordingly!
The simple truth is that none of us actually knows the answers to what life will bring to us, when and how we will die, and how enjoyable our experience is going to be along the way, whether we are chronically ill or not. Living with a disease like scleroderma really just presents more reasons and opportunity to ask these questions. I believe, however, that it isn’t really the disease I’m afraid of, it is the unknown. That is something everyone faces, regardless.
I find a strange comfort and soothing reassurance in knowing that I could be run over by a bus tomorrow. Because none of us, chronically ill or otherwise, really knows when and how our time is up, do we?
Life is there, waiting for us with each new day. Even if we do know the number of those days we have to go, each one is to be lived out, regardless. It just makes much more sense to use the hours in each one for enjoying the living of them, rather questioning how many are left.
In a strange kind of plot twist, it turns out that fear is actually the thief that is stealing the days I have left to enjoy my life, not some lousy disease.
Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to scleroderma.