There are people in my life who have known me for many years who do not know that I am a PD patient. I simply haven't told them. It never mattered. My closest friends and family know, of course. But sometimes I need to get a feel for a person's personality before I share anything related to PD.
Why? Because of the pity issue.
One thing I have been very protective of since becoming a PD patient is my ability to be viewed as a complete person and just as I am. I've been disappointed in the past by people who forget to treat me as a friend and instead treat me as a "sick person."
Rachel and I were talking once about the difference between someone saying, "Hey! How are you?" and someone tilting their head to the side and gently saying, "Hey... how ARE you?" It's frustrating when people assume that your need to do dialysis makes you somehow sad all the time and deserving of sympathy. The option to do PD instead of hemo is a choice that gives me freedom to feel much more "normal" in my daily living. As soon as I button my pants, my disability is hidden. And I like it that way.
When I meet people, I need time to get to know them and see how they behave and how/if they gossip about other people in their lives. If someone is a real talker and loves to share personal information about other people just to sound more interesting, they certainly don't need to know about my private issues.
My closest friends never bring up PD. If there's something I want to share with them, I will. We have so many other things to talk about. It seems trite to spend our time together to blah blah blah about the PD process. And it makes me feel like a complete person. Not a person with issues, unable to take the focus away from myself.
I've met people with various disabilities who just love to talk about their problems. I understand the frustration and the importance of their concerns, but after a while it gets to be too much. I really wanted to avoid being that person. I didn't want my identity to be "the PD girl." There's got to be more to a person than just their disability.
It's not rooted in shame. It's rooted in finding appropriate outlets for discussing my issues. And setting aside time for PD-specific talk with people I love. And not bringing it to light every single time we meet. Also, I love the ability to keep my PD to myself and let people get to know me as I am - as a person - before they put any sort of PD label on me. It makes me stronger and more confident.
Choosing PD over hemo is another way to exert control in my life. To find privacy when I need it. To live more closely to my ideals. And to define myself with my own parameters.
- Rachael M.
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