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I ran into someone recently, I hadn’t seen in years. She used to work for me. She wanted to know what was new with me…where I was working now….all the usual questions.

There I stood, struggling for answers. Where do I work now? No where. What am I doing these days…nothing. But I’m not really doing nothing. I am focused on taking care of myself. I am working. I am working on my health. How do you explain this to people in a way that doesn’t sound incredibly self absorbed?

Or, does it even matter?

So, I took a deep breath and simply told her the truth…that I was retired. She looked at me cross eyed and said, “You…retired? You’re too young for that!” I really didn’t want to explain my situation to this former employee but her persistence seemed to beg for an answer. So, I shared another truth and told her that I’d been very sick recently and took time off.

Her response was typical…”But you look great! You don’t look sick at all.”

Sigh…

While it’s always a pleasure to hear that you are looking good, it can be so hard to get people to understand that looks are often very deceiving, especially with someone like me because I try not to play the part. I don’t WANT to look sick. I try NOT to look sick, which only ends up confusing people.

I simply thanked her for the complement and joked that not working does wonders for reducing your stress level. She half giggled and I changed the subject. I asked her about what she was up to and thankfully people love to talk about themselves. Now the focus was off me.

Since my diagnosis of sarcoidosis, I really don’t like talking about myself. My life isn’t my disease but my disease is a big part of my life. It’s hard not to have it become part of the conversation at some point and I don’t really like talking about it to people who I don’t know very well or haven’t seen in a long time.

So, I think I’ll just tell people that I’m “fine”, leave it at that and then ask them about their lives, since that’s all people really want to talk about anyway. This is my ticket out, a way for me to keep my life private. I know it seems ironic that here I am writing a public blog about wanting to keep my life private. I get that. But, my current health situation is just not something I want to talk about with acquaintances or near strangers while I am standing in a grocery store.

Every time this happens, I end up feeling weird about it but I shouldn’t have to feel weird because other people react strangely to my disease and the way I “look”. I know my experience. I live with it every day. That’s all that matters. They don’t have to understand that I look good but feel like crud. That’s my business and I can handle how I live with my disease any way I choose.

So, if being retired at 45 is what will keep me healthy, so be it. If trying to look my best despite feeling like I am decaying inside helps me, I’m going to do it. It’s not my problem if these things confuse other people. It’s not my problem if someone thinks I am selfish for taking care of myself.

The lesson here is that I can’t expect other people to understand but even more importantly…they don’t need to.

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