The many faces of chronic illness

It took me two years to make my diagnosis public. My family and very close friends always knew, but some people only found out accidentally and others found out when I started posting my blog entries in the social media.

If they follow my posts and tweets, they could not have guessed how much my life has changed in the last couple of years. They see me in Uganda, trekking through the jungle. Having a glass of wine on the beach with my husband. A dinner party with friends, thousands of activities with my children,…They see me – aging, but more or less the same as always.

After my “coming out” as a leukemia patient, people might wonder if I had lied to them all the time. The answer is: No, I haven’t. I have shown those aspects of my life to you that were important to me somehow. And I will go on to do so.  I am writing about another side now, parts of my life you didn’t know about and you would still not be able to guess if you met me on the street.

Chronic disease is so difficult to understand. It takes control over your life, but not always. It is present, but not always. If you wonder, how it is possible for me to travel to Africa on one day and to become completely passive because of my fatigue on another day… let me tell you that I wonder about it, too.

Lately, I have felt unable to plan anything. If we book a trip, we pay for travel cancellation insurance – something we didn’t do before. I don’t confirm parties and other social activities as quickly as I used to. I try to explain that I might have to cancel on the same day.

Let me give you an example: next week, we are expecting visitors, house guests. I know that we will eat out, take the children to amusement parks and go to the beach. I am sure that I will need to rest in between, while the others can go on from dawn till dusk. I would not post a selfie when in bed though. I would maybe post a picture of our kids having fun together. Wouldn’t you, too?

When I was diagnosed with cancer, there was a lot of compassion. After a while, people were getting restless. They wondered why I was not undergoing chemotherapy yet. Later, they forgot about it. Now, some of them might think that it can’t be that bad if I am still alive and kicking. Otherwise – how could I be leading such a vibrant social life and engage in so many fun activities?  I don`t blame them. Even my family has difficulties to understand me, when I switch from an avid party animal to a fragile sleepyhead.

That’s what “chronic” is all about. It doesn’t go away. It is always there, but not always apparent. It gets more serious – in baby steps.  Believe me, it does.

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