Chronic Lyme Disease Summit 2

To tell, or not to tell

That is the question.

 And it's one I've considered very carefully. Being that I live with my "boss", it was pretty obvious that I'd tell him! But seriously, I learned the hard way not to tell others.

 I'm not saying that either way is right or wrong. You have to weigh your particular situation, and weigh it very, very carefully before you reach a decision whether to tell or not to tell. And, you'll have to make a separate decision for each and every person in your life.

 People don't understand fibromyalgia. "Fibro your what-a?" is an old joke, but I bet most people think it when they hear the word. I get some pretty strange looks. Trying to explain it to my 87-year-old mother, who is a retired R.N. was easier than I thought it would be. I told her it was a type of arthritis. I told her "In your day, they used to call it rheumatism." She understood! And I thought she'd be the person with the most difficulty. Nope, it was my same-age co-workers who had the most trouble. "Why don't you try ______?" "You don't look sick." "You're just doing too much." "Well, K2, we're getting older." Even those who seemed as though the believed and cared, "How are you doing today?" I'd give an honest response, and their standard reply?... "But you look so good."

 The thing people don't understand about fibromytes is that we try (extra hard) to look good. We don't want to look as bad as we feel! If only they understood. If I had a nickel for every time that thought ran through my head. So, I just stopped talking about it in the office. I even go so far as to avoid the negative people, and skate very wide circles around the ones who come right out and ask how I'm doing. I've decided I don't want to discuss it. A far cry from the earliest days of my plight with fibro, where I would try to talk to anyone and everyone... but being undiagnosed made it triply difficult. 

Most of the time, they all thought I was crazy or depressed. Especially when I had to stop dyeing my hair due to chemical sensitivities.

 Therefore, we each have to think long and hard about whom we want to tell, or even if we want to tell anyone at work or elsewhere about our condition. Even a really good friend, or a relative, could give you "the look" when you announce you have fibromyalgia. Suddenly a rift appears, where whence there was none. You've said, out loud, that you have fibromyalgia, and you've said it to someone who doesn't understand the syndrome, doesn't believe in the syndrome, or doesn't believe that you "have" fibromyalgia. Now what? You can't take it back. Has this one ever happened to you? They don't ask you any questions, at all. The person just clams up. It's happened to me too many times. An awkward silence. The dialogue has stopped, and you have to make the choice to sound like an idiot and start explaining fibromyalgia even though your friend didn't ask, so you sit there in silence, or change the subject.

 And so I had to make a decision. Do I tell people, or not? I generally lean towards not. There was once a time when I wanted to tell everyone, and I tried to. I wanted so desperately for them all to understand, to know how sick I felt, how tired I was, how much pain I was in, why I had to cancel all those engagements.

 Of course, now I've created this web site, and so everybody pretty much knows about me now!

 You have to use your own judgment on a case-by-case basis. The most difficult will be telling your employer or supervisor (or not). It's ok not to tell them. It's also ok to tell them. You alone know your specific situation, and you alone must make that decision.

 If you think you'll get fired on the spot, or phased out in some awful way, then you probably should keep the matter to yourself. If, on the other hand, you have a very cool boss (like me!) then you can give it a try.

 Don't fight or argue if the person reacts "typically" (like I've described above), just smile politely, change the subject, and perhaps try another time. It's possible that person could be having a particularly bad day, or your timing was "off" for other reasons.

 If you're really determined to tell your boss or supervisor about your condition, then choose a good time, be creative. Call it "rheumatism" or "arthritis" if you have to, just like I did with my Mom. Your objective in telling your employer is to notify them that you have a multi-symptom pain and fatigue disorder which affects all aspects of your life, but that you are determined to keep working despite the chronic nature of the syndrome.

 You are not looking for anyone to pity you.

 Be creative, but also be honest.

 Don't lead them to believe that they're going to lose you as an employee -- in fact, convince them of just the opposite by stating that you are dedicated to your job and you have no intention of leaving. 

Tell them you are receiving treatment from your doctor, and that it's not the kind of situation where you would ever be told you have to stop working.

 Tell them you're feeling better (if you are).

 Give as much positive information as you can. The most positive thing you can do is to show them that you're still very capable of working by doing your level best each and every day.

 On the positive side, there are people I've originally chosen not to tell, who eventually learned about my fibromyalgia, and turned out to be the most supportive people of all!

 It just goes to show you, you never can tell!

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