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My Fears as Someone With a Progressive Illness

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Life with a progressive and fatal illness can be hard.

The day-to-day can get marred with a great big “this will get worse” cloud.
Thinking of the future can be terrifying. You pray you’re still going to be well enough to enjoy what most people take for granted when looking into the future.

It can be scary and isolating, not wanting to upset loved ones with your fears for your future. There are far more emotional impacts than physical at times.

People say to focus on the here and now – one day, one week at a time – but that spoils the joy of being a mother or father at times, as part of the joy is looking forward to weddings and grandchildren.

It also makes you feel scared for your partner – how will they cope when your condition gets worse, or when you die? You worry they think you’re a burden now, so what happens when your illness progresses?

All these thoughts can greatly impact our emotional state and can make us moody, tearful and depressed at a time when the world is saying, “Enjoy the moment, make the most out of life, every day counts.”

Which it does and you do, but still this cloud follows you and whispers in your ear all the things you don’t want to be thinking .

With thinking of the future comes the fear that your illness is bad enough already – what will I be like when it gets worse?

It’s slow and painful, but I try and forget about it and be positive. I am determined to enjoy my time despite of this.

Although I want to live in the here and now, stay positive, make every moment count…this can also add extreme pressure because I know I should and I feel like the world would think better of me if I did.

I would love for people to remember me as a fighter – someone who never gave up, made every second count and stayed upbeat and optimistic to the end. But what if I can’t do that? What if I’m not brave and don’t make every moment count?

The only thing we can do in life (or death) is be ourselves. Dealing with a progressive illness is bloody hard and scary. But I try to console myself with the fact that many people with a progressive illness probably feel the same.

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Thinkstock photo via tixti.

Originally published: May 19, 2017
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