Graves Disease – How much to share?

This morning, a coworker commented that I looked well this morning and asked if I was having a pain-free day. I explained that it was indeed a good day so far, but that pain was always present. She seemed to understand and was happy that I was feeling better than the day before.

Two hours later, I get up from my desk and a manager asked very loudly and very publicly if I had hurt myself again because I was walking better the last time he saw me. We were in the middle of the office and I was expected somewhere. I didn’t want to stop and have a long and public explanation about what was happening with my health, so I shrugged and said it’s just the way it is today. I know that another manager was listening intently to my reaction, which made me feel even more on the spot.

I am really struggling with how much to share and what to say to people. It’s not that I want to keep any secrets per say, but I don’t want to pass my days explaining to people how I feel or what my doctor said at the last appointment. I am also very much aware of the two example above, that I am at work and I also worry that oversharing might make me loose that said job, so I try to keep the small lines to myself.

Unfortunately, I found that opening up doesn’t always have a positive effect. What I shouldn’t have to put up with (and neither should anyone else) is being looked down upon, looked upon as a burden. I find that I am getting this response, luckily not from my employer, but from the Human Resources Manager. I know that many with chronic illness face this issue at work and with family. It’s bad enough having doctors question your physical and psychological health as you go through diagnosing and the healing process (mine seems to dismiss the fact that I don’t feel better since the medication started) without people who have never had medical training calling you are a liar or implying it or telling you about this medical cure that would solve all issues in a matter of minutes.

The struggle about how much to share isn’t just at work. Last weekend we celebrated one of the kid’s birthday and had the extended family over. I was struggling with how much to share and what to say to people also. I also get tired of repeating the same story over and over.

I personally don’t share any information unless the conversation leads to it. I try to say just enough information for them to understand what is going into too many details. Of course, a number of details vary depending on the type of relationship I have with the person. I never bring up my illness on my own. I don’t want to bum everyone else around me out, just because of my health sucks. It’s the reality I have to live with. It’s not there’s.

I am honest when people ask me direct questions. I don’t want my illness to feel like a dirty little secret either. I also want people to know that if they see me struggling, it’s because of health issues. I also want them to understand that if I’m smiling it doesn’t mean the pain isn’t there. If you don’t say anything people will come up with their own explanations.

Unfortunately, having some personal guideline about what to say, how much to say and to whom, still doesn’t make certain situation/conversation any less awkward.

How much do you share or keep to yourself? Do you ever feel on the spot when someone asks or assumes the wrong thing?

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