After a year and a half, I finally have been diagnosed with Lyme and (probably) Bartonella. Now I'm wondering how to tell people in my family and at work who think I seem "just fine."
Did you tell one family member and let them relay the information? Did you send out an email with Lyme factoids and links?
And how did you handle work when you're never sure how you'll be functioning day-to-day ... especially when starting a new treatment plan?
Starting Mincin tomorrow; already in detox with Diflucan, Burbur, Pinella, Theralac, B12, and candida diet.
Posts: 118 | From Northern Virginia | Registered: Apr 2012
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randibear
Honored Contributor (10K+ posts)
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i don't hon. for all the reasons people post on here.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
nope, Keep it totally to yourself, one day you may tell but not now , not is the time, ESP if u work, u do not want to be seen as a "sick" person, plus lots of people are scared of Lyme, that they will catch it somehow. it's your blessed secret for now and keep it that way no matter how much u wanna talk.
Posts: 532 | From Texas | Registered: Oct 2004
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Summer3
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posted
I told a few people other than my family members. I now wish I hadn't. One person could care less and doesn't want to hear that I'm not feeling well. She thinks I'm exaggerating or a hypochondriac.
Most of the others do not believe in chronic Lyme. Sadly, many of these people are in the medical profession.
If I could do it over I would just tell my closest family members. To others I would say nothing unless asked about my health. My response would be that I have a non-communicable chronic illness that I wish to keep private.
At work, I try to hide the symptoms that I can and then I crash when I get home. That became hard when I started getting extreme twitching, 30lbs of weight loss and temporary limb paralysis. I have to get creative to cover those up lol.
posted
Once you start treatment, you may not have a choice if you are feeling worse. Just tell them, maybe not in an interview situation. But better to tell co-workers as opposed to them thinking you are incompetent when you are really ill or have dr. appointments.
I would tell a family member to send out one honest email with a link the the movie "Under Our Skin" and let them tell relatives. You're friends, you can prob tell. No one will ever completely get it but you'll find some are really sympathetic and helpful.
I'll never understand the "keep it under your hat" philosophy. It's no wonder we've made no headway in this illness for 30 years. To each his own I guess.
Posts: 184 | From taking pills | Registered: Oct 2011
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Keebler
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- You could risk your job if you tell ANYONE work. So, if you already have, then, you should get into Human Resources and declare a disability before they get wind of this IF you are having any trouble getting stuff done.
You could say that it "may be temporary but are not sure at this time as medical science can't tell us everything." Something like that.
If you need some kind of accommodation in order to DO your work, you can go to HR and request special reasonable accommodation for health reasons (be vague).
If you are dizzy at all, while that's a rough symptom, it can serve to quelch others' curiosity.
Dizziness, vertigo, etc. are called vestibular symptoms and that can cause fatigue, trouble with sounds, lights, stimuli, etc.
So, find some symptoms to shortly and sweetly use when you need to pull something out of the hat.
If you are sensitive to fluorescent lights, certain sounds or smells: ditto.
If you need nap time (unpaid blocks of time that would be at times during your otherwise normal work schedule), that is another thing you can request.
If you need to work from home some days or make your schedule more flexible, that, too.
By declaring a disability with HR, you have some kind of protections as long as the work can still get done.
However, to tell them you have lyme could cost you your job and your insurance. And life insurance.
Funny how health insurance rarely covers lyme, most doctors say it's no big deal and can't be chronic but life insurance companies find ways to cancel, especially if a new policy.
The road to wellness here is so bumpy that it's just best to keep a lot of this to yourself for many reason.
Connect with your local lyme support groups, though.
You might find a ADA attorney (Americans with Disability Act) just for some advice on how to secure your job and also have flexibility that you may need. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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philly78
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posted
I told my family, friends and coworkers. You have to realize that you could also risk your job if you don't tell your boss.
What if your one of those people who gets worse and has to call out? What happens if you find yourself calling out too often? What if you need to apply for FMLA at some point.
I don't understand the "keep it under your hat" philosophy either. Seems absurd to me. But that is just me.
As for insurance, I'm not having any problems with getting things covered. MY MIL has been in treatment for 10 years and hasn't had a problem either.
-------------------- When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal. Posts: 1000 | From PA | Registered: Mar 2011
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Summer3
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posted
I keep my diagnosis private mainly for insurance purposes. I have already had denials and have not openly disclosed that I am treating Lyme.
I also work with members of the medical community who know my LLMD. I don't want to cause him any trouble by disclosing that he treats Lyme outside "their" standards.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You can tell HR at work that you are ill, disclose certain symptoms, but you do not have to tell them the diagnosis. The word "lyme" can cause so much heartache.
After you get going with treatment and see how it goes, you may offer more details - or not. But only AFTER you've already declared a disability if need-be. And don't do that if you don't need it. You may or may not need to do that. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I think it could backfire on you at work if you tell them. They might ask you to leave if they think you can't do the work.
With family and friends, I explain it medically, to give them a mental picture of the disease entities, how they operate in the body, how it makes us feel, and how we're planning to treat. I think the more factual info, the more they have a chance to understand.
If they don't care to, I wouldn't waste my time on people who don't care enough to want to understand and offer some support, or at least the willingness to accommodate.
Posts: 13107 | From San Francisco | Registered: May 2006
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Rumigirl
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posted
It's always shocking and disheartening to experience how people who supposedly love me don't want to hear or know one single thing about how I'm doing!! And that is almost, but not quite, everyone, except for my husband, and some Lyme friends---really only one other friend and one niece cares.
That isn't everyone's experience, but it is more common than not, unfortunately.
All along, I have told very few people. And have told next to nothing in terms of details, except with the very few who care. It's quite sad. It makes me feel like a lonely leper!
I hope your experience is better. But be careful about telling people at work!
If we had cancer, people would come bearing casseroles!
Posts: 3766 | From around | Registered: Mar 2008
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posted
I wish people at church would stop asking how I am today. Just because I dragged myself to church for an hour doesn't mean I feel good and sitting for one hour makes me feel worse.
No one wants to keep hearing that you aren't better but I am not going to lie and say I am fine. I have offered books and the documentary to them so they might know what the scoop is with this disease.
What do you say when people ask how your are? Do you really tell them how you are feeling if they know you have Lyme?
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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posted
Faithful, if I don't want to go into it, I say could be better, but I'm happy to be here, kind of thing, and then ask them how they are or switch the subject.
Posts: 13107 | From San Francisco | Registered: May 2006
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96199 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Most who ask don't really want to know other than in passing. So "fine" often works for that context.
Other answers:
Okay, all considered.
Managing
Fair to Middlin'
Just trying to keep both oars in the water
A bit Crispy around the Edges but, hey, isn't the weather (whatever it is)? (or otherwise change the topic)
Oy, Vey! Not quite ready for those Olympic tryouts yet, I guess.
For those who may want to know more, select one article or DVD or video clip to share and let it go.
Remember, once you open the gate to tell them all about it, they may tell you all about what THEY think is just wrong. Be very careful how you plan this and the dynamics that you set up.
If you need others to understand, in all kindness I suggest doing all you can to drop that need or desire. If they have the ability to still be close to you, to really BE with you and all this, great. Most do not. They cannot be pushed. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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payne
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posted
remember, when we felt great, not good, great ! I have some good days.. maybe in the past 5 yrs I had 2 GREAT DAYS.. I haven't touch alchol, in 5 yrs..either.. Most of Us that have established our condition by our live style, is seen by close est of friends, as I don't do fun things anymore, that take any endurance, or thought figuring ideas.. Hell, I can hardly sit at the bank of my favorite fishing hole with out getting vertigo from the trees swaying and the water movement.. like car sick/sea sick.. anyone that knew the old me - Knows the new me is not right...
I am only 56 and saying its just old age is starting to work...
Very sad for the chronic people here that most seem to have been very active people, before this bacteria/parasite/immune infection found its way into OUR LIVES...
Yes, Lymetoo... YOU ARE ALIVE ! Thank GOD,
I say " just doing my best" God Bless all the eyes and ears that hear US.
-------------------- TULAREMIA/rabbit fever ? Posts: 1931 | From mid-michigan | Registered: Jun 2010
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posted
Oh gosh, it never occurred to us not to tell. We think it's our job to educate others, IF they want to learn. Daughter has been very up-front about it. She therefore gets lots of much-needed support from the family and friends who stuck with her, and to heck with the ones who doubted or dropped out, who needs them anyway?
She didn't look "just fine," though, she looked exhausted among other things and could barely cope, so maybe that helped people believe her. And she can't work anyway, while so sick, so she doesn't have to deal with an employer.
Posts: 228 | From Mass. | Registered: Feb 2009
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posted
I absolutely had my family, friends, boss and co-workers involved and informed all along. I can't imagine having gone on day after day feeling like that and not letting them know why. I've gotten great support both at home and at work. I guess I'm either extremely lucky or the total openness was a good move (or both).
-------------------- Wendy Posts: 253 | From Near Albany, NY | Registered: Jan 2009
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posted
I have shared this with almost everyone I know. And it goes both ways....people think I am crazy...some support me. Mostly everyone at work is very supportive, and my husband. Other than that..it seems everyone is so self-centered or to busy to ask or even understand how we all feel. I am crying inside most days, and most don't even know..
Posts: 148 | From AZ | Registered: Sep 2011
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posted
With family and friends I told them over the phone or in person and followed-up with an e-mail and a couple of links to offer them a little education.
I do try to share and educate when I get the opportunity. I want as many people to know about Lyme as possible. I feel like it is a small thing I can do for the cause, so to speak. I think you have to gauge others interest in determining how much detail to tell them about Lyme. When they have the interest, I try to educate them as much as they want.
With work, that is tricky. I retired early not knowing I had Lyme. So I didn't face that problem.
I think it depends on your relationship with your boss and your company, how flexible you think they can be, and what your legal rights are. If you'r not sure, try to protect your position as much as possible as some of the other comments mentioned.
My heart goes out to people who are working with this rotten bug.
How are people ever going to support us if they don't understand our disease?
Good Luck
Posts: 164 | From California | Registered: Aug 2009
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philly78
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posted
Same here Wendy. I have lots of support. Thank God because the mental aspect of this disease is killer! Of course, there are those who have some things to say but they are the minority.
So many people around here are dealing with lyme though and it seems everyone knows someone who had a difficult time with it.
-------------------- When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal. Posts: 1000 | From PA | Registered: Mar 2011
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randibear
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the worst mistake of my career was telling my boss and co-workers.
first, two of them were leave abusers themselves so that didn't help.
at first i rarely missed work. then as the stress of working took a toll i missed more. eventually my boss went to the flight surgeon to check on my "condition".
yes, i went to personnel but was told that identifying a disability could affect my retirement and that people were considered abusers, yada, yada, yada. now everyone knew at work never to tell anybody in personnel anything, so big mistake.
as soon as you told somebody in personnel they would go to your manager and tell them everything. it caused a lot of problems.
while my boss appeared to accept that i would miss work, the co-workers comments were unrelenting. snarky things. i couldn't take it anymore so i left.
i would say for me it was pure hell and i wish i had never told them.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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MichaelTampa
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Maybe a simple summary of this is that it can be a good idea to tell nice people and a bad idea to tell jerks.
You may need accomodations at work, and for many employee/employer situations, FMLA applies. The better operations will be situations where your doctor is giving the needed information to someone in HR to make various decisions. Then HR passes the info on to your boss that such and such accomodation is being made or should be made. The boss need not know the condition (of course there still may be benefits to sharing, some bosses act like nice human beings).
Posts: 1927 | From se usa | Registered: Mar 2010
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posted
Thanks, everyone, for sharing your experiences and thoughts.
I'm still not sure what I'll do regarding work ... though I'm sure I'll burn through my leave pretty quickly now that I'm in treatment.
Unfortunately, I'm still in my probationary period at work, so I need to be very careful. I've been in this position for just six months (with the employer for five years).
We've had some chronic leave abusers here too, so I know people are very suspicious of time taken off.
Posts: 118 | From Northern Virginia | Registered: Apr 2012
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posted
Thanks, everyone, for sharing your experiences and thoughts.
I'm still not sure what I'll do regarding work ... though I'm sure I'll burn through my leave pretty quickly now that I'm in treatment.
Unfortunately, I'm still in my probationary period at work, so I need to be very careful. I've been in this position for just six months (with the employer for five years).
We've had some chronic leave abusers here too, so I know people are very suspicious of time taken off.
Posts: 118 | From Northern Virginia | Registered: Apr 2012
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randibear
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posted
believe me it won't get any better. Even the Nice ones will eventually get tired of it all
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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