posted
I am trying to keep a low profile about the Lyme, mainly because most people in my community just don't know much at all about it.
I told all my close relatives and close friends, and then spent a lot of effort educating them and eliciting their support, so things are going fairly well there, and now I have some new Lyme friends as well.
I did not tell my boss or other professional contacts. I am still working at my job. I have (temporarily, I hope) given up some freelance work that I used to do.
I just informed the head of a professional group I belong to related to the freelance work, that meets every month, that I need to be on inactive status with the group for the coming year because I am coping with a health problem that requires me to conserve my energy.
He replied cheerily that of course they will make allowance for my health, and said various reassuring things about how much they value me as a member. He did not say he would put me on the inactive list. I think he assumes I will be fine by next month.
I think that he has the mistaken ideas that a) my health problem is short-term (possibly an extra lengthy cold virus?) and b) he needs to reassure me because my request to be inactive was a veiled threat to quit the group over some imagined drama.
I don't know how to make it clear that I will not have any energy to spend on this group for the foreseeable future or at least the coming year, and that my decision is unrelated to anybody there or anything that has happened with the group (without telling them all I have Lyme and then trying to explain what that means).
I know I am going to face the same communication issue when I try to reduce other activities and commitments. People will assume I am actually capable of doing these things so they will suspect I have other motives for withdrawing.
I don't want to burn any bridges, because if I am better in a few months or a year, I hope to rejoin many of my previous activities.
Does anybody have anything you say to people to explain the extent and duration of your physical or mental limitations to people who don't know you have Lyme or don't know what "Lyme" means?
I don't need deep emotional support from these people. I just need them to grasp the idea that I am not going to attend or be available to do anything for them for a significant period of time.
I am still new at having Lyme (though it's getting old quick, haha), and have just now started accepting that I am going to have to reduce all my commitments while I recover, and maybe indefinitely. I did not anticipate that people wouldn't take me seriously when I told them so.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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posted
Just say you have Lyme Disease and the treatment is extended. Your doctor said it could be ____ (whatever he said). You need to focus your efforts on healing for several months, so you will get back to them as soon as you can come back to your work there.
If they want to know more, they can ask.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- With your work, you might want to declare disability if you need some sort of accommodation in order to do your job. Declaring it, officially, with the HR director offers you some protection as long as the job gets done, in time, correctly.
You may not need to say exactly what the diagnosis is, but you can seek an attorney's advice about that, regarding the ADA.
I just lifted this from one of my replies at a current similar thread. Too tired to make the adjustments to your exact situation but the point is the same:
For others - to give some sort of answer if you feel you must . . . as lyme frequently affects the inner ear and balance center - and that causes many of the same symptoms as lyme - one can simply say "inner ear disorder" and that covers a lot of ground.
If asked for specifics, just say there are many different types (besides "Meniere's") and as time moves forward you should learn more - and that not everything is yet known about inner ear function and repair.
A vestibular disorder also can explain why you would need time off . . . or when you return: subdued lighting, quiet atmosphere, rest periods, etc. . . .
Beyond that, if you are open about lyme you could do a fabulous service to all those in your company to organize a lyme awareness program - or just find someone to do that - or just the right DVD and pamphlets.
The company should see that education and prevention can benefit everyone - and their families and pets, too.
However, if you are very vocal and visible about lyme, you also would run the risk of always being known in relation to lyme. That could pose many challenges to your future.
posted
If it gets to the point that I have a lot of trouble doing my work and I start missing days or need disability, I am going to tell my boss and my HR person all about it.
In the meantime, I am not telling them because I don't want them to start looking at me funny, scrutinizing me for signs that my illness is causing me not to perform well, when I'm making such a huge effort to be here every day and do a good job in spite of it.
I do think if I tell people about it, I should just go with the truth--so much easier to remember, LOL. And I agree that raising awareness is much needed around here. But I don't have the energy to push for it.
I suppose I could be vague and say "I have a chronic infection" or something like that. But I don't want people to assume it's contagious and not want to be near me.
My problem is what to say to those people who I have chosen not to tell that I have Lyme. Or even if I have already told them, but they have no clue why that's a problem.
Even the people close to me who have read "Cure Unknown" and watched "Under Our Skin" at my request still trip on that.
For instance, if I say to one of them, "No, I can't do X this weekend because I'm not feeling well this week," they say, "Oh? What's wrong? Have you got a cold? Was it something you ate?"
Um, nope. Still got Lyme disease, LOL.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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posted
I hear you...last sentence struck a chord......
-------------------- Oct 09 Positive CDC Western Blot Jan 10 Positive Babesia Duncani Jan 10 Cd57 28 Mar 10 EBV, IgM, IgG HHV-6 IgG Posts: 739 | From NC | Registered: Oct 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I use these a lot:
* my body is telling me a quiet weekend is in store . . .
* I'm looking forward to finishing a good book (but be sure to have some good titles upon which to draw)
* gotta restore my battery . . .
* You know, my neck is a bit sore, it probably needs some down time . . .
* My eyes are a bit overworked lately, they seem to be calling for a long nap . . .
* my writing is calling (be sure you have subject matter and genre, at least, in case you are questioned) . . .
* I do volunteer work on the moon - I'll be gone all weekend . . .
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I actually don't feel the need to have to explain my limitations to anyone. I use to feel that I needed to explain myself, but after a while I have found that the excuse doesn't really mean anything to anyone anyway. No matter what, they are never going to get it.
Its your business if you decline an invitation to do something and no one needs an excuse for why.
As far as work goes, just go about your business as usual. If it gets too hard, then just tell the truth.
I worked 5 months after getting sick. Didn't know what was wrong with me then. A few close work friends knew I was ill and knew I was struggling, but the bosses didn't even notice. At least as far as I knew anyway.
Oh, and don't cross bridges before you get to them! I have to tell myself this everyday.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
Oh, thanks for those, Keebler! Anybody have more like that?
The book idea sort of works because my house is filled with stacks and stacks of books that I am either reading, about to read, or plan to get around to reading someday soon. Definitely believable, and I can come up with titles at the drop of a hat, without even stretching the truth.
On the other hand, I'm ALWAYS reading a good book and carrying around a couple others, so nobody will believe that's anything unusual for me.
"Doing volunteer work on the moon"--LOVE that one.
I think this is actually the kind of thing I was looking for--sort of lighthearted (but more or less realistic), short things to tell people as excuses.
Trying not to say "Oh poor me, I have this horrible disease that gives me this list of awful symptoms and I don't know if or when I will be cured." But to still say there is something keeping me out of commission for a certain period of time.
Though "reading a good book" doesn't explain why I won't be attending meetings for the next year. I'm a much faster reader than that, LOL.
I have also resorted, instead of explaining all about my Lyme, to telling people, "Just take my word for it--do NOT get bit by a tick."
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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posted
Thanks, sutherngrl. I was typing while you were posting.
Maybe I am still going through an early stage where I am having trouble accepting that I am actually sick and not just about to get over it in a few weeks.
I keep thinking, how can I just stop doing everything? (Well, everything except work, I mean--not planning to stop doing that if I can help it.)
Maybe that's why I am still feeling an urge to explain myself.
I feel like I ought to be able to just manage somehow, take my meds and get on with things. I've never let an illness or injury stop me from living my life for more than a few weeks before, and I have had a few.
Despite some minor physical limitations I already had, I've never been able to think of myself as a person with any degree of disability.
But obviously this illness is different. And pushing on through it seems a good way to exhaust myself and not get better.
Maybe it would be easier to change my own attitude than to explain things to others.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Changing attitude is hard but essential.
First, you don't have to defend yourself. A simple explanation should suffice.
And - ask yourself, honestly, what do you expect from the exchange? If at work, is it really necessary that others understand in order to complete the task at hand?
Do convey your appreciation of their asking if they are genuinely concerned but, still, it's easier just to honor the boundaries respective of time, place, people.
It is perfectly okay to say:
I have to really limit my energy output now and for some time to come. that is not on my list right now.
You can add, if it's true:
But, I'd like to hear about it later - or - I'm glad that project is in good hands.
ALWAYS take the focus off of yourself (I rarely say "I" . . . I say "my body . . . my neck . . . my energy . . . ) this puts the judgement not so much on you and your personality/character but still explains that your body needs a different arrangement / time off.
ALWAYS leave them with visuals of other things - and some anticipation for future events that have nothing to do with you. -
[ 01-26-2010, 08:16 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Certainly you have to push through often but make sure you find a good balance.
I have pushed through for too long. Last week someone came to my house to take measurements and I actually said I am too sick to do this right now. And it felt SO good to do it.
Kind of liberating.
And I should have done it a long time ago. Take care of yourself!!
-------------------- unsure445 Posts: 824 | From northeast | Registered: Jun 2008
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posted
Check out the Spoon Theory towards the top of Medical. I thought of you as soon as I read it.
Posts: 365 | From Sylvania | Registered: Aug 2008
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