Learning to Embrace Uncertainty in All Aspects of Life
I am in the middle of a big change. It feels like one season of my life is ending, and a new one is slowly beginning. I’m experiencing changes in scenery, people, job, and mindset. I’m ready for something new.
But these changes involve a lot of uncertainty, which is both scary and freeing. My future holds many opportunities, but so much is unknown. I have a lot to discover, learn, and try. I am growing and leaving my comfort zone.
Rare and uncertain
Growing up with epidermolysis bullosa (EB), a rare skin condition, I was used to plans changing. I hurt myself before an event more than once, and was often in so much pain I couldn’t participate in planned activities. I had to improvise a lot and constantly prepare for different scenarios.
A multisystemic condition
EB not only affects my skin, but also many parts of my body. Although I have one of the more severe types, I have a rather mild form of it. I can live independently, and have found ways to do everything that makes me happy. But of course, EB is a big part of my private and personal life, as I discussed in a previous column.
Different preparations
I had to get used to doing things differently than most people around me. I was always prepared for the possibility that I wouldn’t be able to do things in the same way as others, or in the way that I had hoped. I had to accept that sometimes I can’t follow through on plans that were made weeks earlier. So, I am pretty good at accepting the impact of my condition on my life. I simply try to contain and minimize that impact.
My questions
Has living with EB prepared me to handle uncertainty, or has it made me even more sensitive to it? I wonder if being OK with something in one aspect of your life allows you to be OK with it in all aspects of your life.
Do I now struggle even more with uncertainty? Or, has the uncertainty of my condition made me long for stability, certitude, and safety in other areas of my life?
After thinking on this, I am sure it is the latter. If I can accept the uncertainty of living with EB, I can learn to accept uncertainty in other parts of my life, too.
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Note: Epidermolysis Bullosa 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 Epidermolysis Bullosa News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to epidermolysis bullosa.
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Comments
Andi Miller
Thank you for your beautiful thoughts on this topic "uncertainty".
I for myself think living with EB, also in the sense of falling "out of the grid", often having much rather to cope with normalcy than with EB (to turn that paradigm upside down) taught me a lot about life and existence. I do believe I would be a completely different person without "my EB" and for that I am thankful and i am proud.
With "uncertainty" i also have to associate other people's reactions towards me, that are often hurtful and belittling (although friendly at first glance). I believe EB can cause feelings of uncertainty and discomfort in others towards themselves, maybe even towards the fragility of their own bodies, that they cannot handle.
So i would say, "EB" indeed was and is a lesson in "uncertainty" or rather in questioning "certainty" (which is an illusion anyways) altogether.
Lena Riedl
Hey Andi,
now your comment got published after all! :)
Thank you so, so much for sharing your interesting thoughts on that topic. It is so nice to hear other peoples point of view!
Also it is so good to read that you also found something good in EB. That you also accepted it as part of yourself and it makes you proud. I think that is something really strong!!
What you say about other peoples reaction is very true - now that I think about it I have experienced the same.
This sentence: "I believe EB can cause feelings of uncertainty and discomfort in others towards themselves, maybe even towards the fragility of their own bodies, that they cannot handle." also made me think a lot and I think you are very right.
Thank you so much for sharing this with me. I will keep on reading it more times and maybe we can come together and discuss it further!! :)
Bis bald!!