Why I’m No Longer Hiding the Reality of My Illness


I’ve spent this past week learning how to self-cannulate, how to locate veins in my arms, how to make them stand out by dipping a limb in hot water, how to tell which ones are sclerosed from old cycles of chemotherapy from the way they feel when a needle meets the vein wall. In three four-hour training sessions, I learned how to hold a butterfly needle so my hand doesn’t shake while I’m piercing my skin in search of a usable vein. I  learned I mustn’t hesitate with needles. One smooth, decisive movement. I also spent an entire morning looking for veins — digging needles into my flesh, pulling them back, going in again and again and again and failing. A few days later I hit a vein on the first try.

For years after I became ill, I refused to share my reality with others. People who loved me and who I loved were left frozen out while I refused to acknowledge what my day-to-day situation was, never mind the emotional havoc that situation was creating. I distanced myself with exquisite skill from friends and relatives in a way that ensured what I was doing was beyond reproach. Paradoxically, through this time I have also been very honest with a couple of close friends about…well, everything.

In a way we all do this. We create personas and master them. And while I’m not advocating crying over one’s week at work or telling a stranger on the bus about self-cannulation, nine years into this journey I’ve reached a place where I just want to be as honest about my day with others as they are about theirs with me.

Needles, catheters, angioedema, blood clots, infections and incurable disorders are not everyone’s cup of tea and I get that. But that is my reality. Sometimes it’s a reality I cherish and on other days it can be torturous, just like everyone else’s. So I’m trying something different and actually talking to people about this stuff. And it certainly feels less exhausting than hiding it.

\
Zoe and her daughter

Follow this journey on Iced Coffee Creature.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

 


Find this story helpful? Share it with someone you care about.


Related to Uncategorized Disorders

The Hardest Words I’ve Ever Had to Say, and How Saying Them Changed Me

There are many things in life that no one can prepare you for. There are things that words alone can not explain. The day I took my baby off life support was one of those times. So many different people in the small crowded hospital corner, and yet no one had the words to explain. [...]

How ‘The Real Housewives of Beverly Hills’ Is Harmful to ‘Spoonies’ Like Me

Let me start by saying that I have been a fan of this franchise from the very beginning of the O.C. edition. I have often called it my guilty pleasure, a show that I’m almost embarrassed to admit that I watch. But I follow many of the different series for different reasons, and the Beverly [...]

My One Wish for the New Year as a Brain Surgery Survivor

I do not write this post to gain sympathy or pity. I am only hoping people will think twice before being so judgmental of others. Nobody knows what another person is going through and we can all try to be a little more kind. My personal resolution for 2016 is to be more understanding of [...]

When the ‘Big Kid Still in Diapers’ Is You

My biggest fear as a child wasn’t of the dark or monsters in the closet. It was being asked by a friend if I could sleep over. I was determined to not let anybody figure out I was a big kid still in diapers, and I spent my childhood trying to cover up my problem. [...]