cut a long story short.....I had to go into my daughters school today, nothing bad she just slipped in some mud and needed clean clothes.........
so my mom drove me over there......I go in and apparently they asked would i be at work....my daughter says no my mum was fired !!!..........
oh says the lady.....she goes onto tell her i am sick and stay home now.........
so when iget there shes telling me how my daughter had put it and i burst into tears.......
she gives me a hug and says "you dont have cancer do you"........
I say "NO I JUST HAVE LYME DISEASE" !!!!!!.......as soon as i said it i thought what an idiot, why did i say that......
ive been sick for years, on antibiotics for nearly a year, have lost my job and disability benefits, dont have a life am sitting here in my daughters school crying but its ok cos "I JUST HAVE LYME DISEASE".......
why do we down play how we feel, because its not validated by the IDSA and not understood by most we pretend nothings wrong..............
I felt such a fool but I cant go into the inns and outs of my medical condition with the school secretary so I just left head down feeling like an emotional wreck........
Posted by Paul Mall (Member # 27581) on :
im sure she figured out how serious it is by your emotion
I actually found out I have lyme about 10 days ago (have had symptoms for 3 years) and I am in my first week of treatment
I am also a recovering alcoholic and spoke about finding out about the lyme disease at a meeting last night and I felt some emotion come out... it's really scary. after the meeting I has 2 other people come up to me and say they have been having various symptoms and seeing several doctors with no answers and how they should be checked.
so I guess it is good to let people know about it. I do believe one of those people definetely has it because he has all the symptoms and claims to have pulled several ticks from his body... did I mention we are in CT.
anyway tell everyone because it may not only raise awareness but also may help another person who has it.
Paul
Posted by Keebler (Member # 12673) on :
- Sadly,
This week's Newsweek will not help. Be prepared, though, in case someone mentions this. Tell them to go to ILADS ( www.ilads.org ) for the real science.
Re: Newsweek's lies about lyme. -
Posted by arkiehinny (Member # 26546) on :
I often feel stupid because I think I tell too many people about it. I work in & out of hospitals so I come in contact with a lot of medical personel. Of course, everyone seems compassionate, though I try to inform them how common it is. But I often catch myself thinking, " Gosh, why did I tell him I had Lyme?...they might think I'm incompetent!" I decided to not keep it in....the more we talk, the more the information goes out. If my supervisor says to stop telling people, then so be it. But until then, I'm talking.
Posted by Misfit (Member # 26270) on :
I live in a VERY small town. I had my routines where id see some of the same people every day. These same people havent seen me in months and when i saw one yesterday she inquired as to my whereabouts and thought it was my back problems and i told her no..ive been really sick with lyme. She asked how do you get that? So i told her. Gave her a mini education and she now suspects a family member has it. I feel those of us infected are the ones to spread the word. Maybe someday it wont be that way.
Posted by METALLlC BLUE (Member # 6628) on :
I understand where you're coming from. Paul came close to describing some of my experience. My parents are both recovering alcoholics. They talk about me every chance they get in order to spread the word. A lot of people have been diagnosed correctly as a result.
It's painful to watch though. So many sick, and Lyme Disease is just one of thousands of disabling conditions.
I live in MA, so the problems here are identical, though our local doctors claim it's not serious. They say "You haven't visited Connecticut have you?"
What? You have to visit one specific state to become infected? Hate to break the news, but CT is only a 5 min drive from Springfield into Enfield.
Idiots.
Posted by sutherngrl (Member # 16270) on :
Don't worry, it might not have mattered how you said it. People have their own idea of what LD is. The positive is that next time you will be sure and not say it that way. At least you did say the words "Lyme Disease". That is awareness!
Posted by RESOLVED. (Member # 24991) on :
How about, "I contracted a life-threatening bacterial infection after I was bitten by a tick"? It doesn't down-play the seriousness of Lyme, and it informs people that it's not "just Lyme".
Posted by LightAtTheEnd (Member # 24065) on :
I have told my family and friends. They haven't exactly referred to it as "just Lyme," but much of the time they treat it as if it were no more serious than a cold.
My relatives have come through for me in a big way, in spite of not understanding, and given me a lot of monetary and emotional support when I asked for it.
But most of the time they sort of treat me like I'm normal, or just have a minor limitation.
My symptoms have been fairly mild compared to other Lyme patients who are sicker than me, but that also causes my family to think that I am not severely affected by it. "Fairly mild" for others is still pretty awful for me on occasion, since I haven't been through worse to compare it to.
Plus I have a lot of anxiety and fear about what could happen to me in the future, in case of treatment failure, future relapse after I get to remission, or hidden coinfections that decide to become visible later on.
To reduce the anxiety, I try to make plans for what I could do to cope with those situations, but my relatives tell me I am being pessimistic by even admitting the possibility that such things could happen.
I disagree with them--I think that by planning for the worst, I am being optimistic and saying, if worse things happen, I will find a way to cope with them.
I know for a fact, since other relatives suffered with cancer for years before dying of it, that if I told them I had cancer, they would treat it as a MUCH more serious condition and would offer to do a lot more to help. Then they would probably urge me to quit my job until I recover, and try to find a way to help me do that.
Since they think Lyme is not only not fatal, but also not serious, and they see me and I look fine, the Lyme just doesn't occupy much of their attention. I guess they assume that I am not in any real danger and am doing just great at taking care of myself (which are not true).
I have not told my boss or coworkers that I have Lyme, because although it's true that awareness is a good thing and we need a LOT more of it around here, I don't want everybody watching me for signs that I'm too sick to do my job. (Shhh, sometimes I am, but don't tell them that.)
Plus at least some of them would be skeptics and just not believe me that I have it, or not believe my symptoms if I told them. Mainly they just don't know anything about it, so they don't think of it as one of those Very Serious Diseases the way most people think about cancer.
One acquaintance who I told about it described her mother's lifelong struggles with fibromyalgia, and her son's work as a landscaper resulting in tick bites, and wondered if they have it. They probably do, but I doubt she will pursue it, and if she did, they may not be responsive at all to following up.
Another friend told me she has trigeminal neuralgia, serious depression, and then was diagnosed with fibromyalgia and CFS. I told her, I bet you have Lyme, or at least a stealth infection of some kind. You should find out because you could maybe be treated with antibiotics and recovered instead of living with it getting worse for the rest of your life. But she doesn't want to talk about it with me, and said she just doesn't have the energy to think about it.
It's very difficult to get through to people sometimes, and meanwhile a lot of people have experienced some kind of discrimination or disadvantage in their work, or hostility in their personal lives, by talking about their Lyme.
I hate that things are like that, but there are very good reasons either way, to talk about it or not to.
I do think, if we decide to talk about it, we should state it as the serious, chronic illness it is, and not fall victim to other people's ignorance and prejudice that causes them to think it is "just Lyme."
I don't think that matters so much because of what you might communicate to others. I think it is more important to the way we think about ourselves and our illness.
Posted by dmc (Member # 5102) on :
Say the scientific name - borrelia burgdorferi bacteria - naw better not, sounds like a STD. Whoa, it could be that too.
We'll never win. I just say..."It's from Lyme, Bartonella & Babesios. You pick which one sounds the worse & I have that."
Keeps them guessing & conversing about tick diseases.
Posted by ThatColorGreen (Member # 16016) on :
Yea. i think i've actually said that too... i didnt feel like getting into the whole thing.
dmc, Neuroborreliosis is the condition. Bb spirochete is just the causative agent.... so if youre late stage, you could always say "I have late stage Neuroborreliosis".
... i said that before and got blank stares so... it's kinda worthless too.
i think if anyone asks me 'whats wrong' i'm going to say
I have MS and Lupus.
because really... those are my main symptoms and people seem to understand that something 'serious' is going on in someones body if they have Lupus or MS.. so.. yea...
Posted by Leelee (Member # 19112) on :
I am so sorry. Please don't be hard on yourself. This disease is inexplicable and difficult to explain even on a good day.
Besides, IMO, the other person should not have asked if you have cancer. Just a kind word hoping you are doing okay is really all that was necessary.
Hang in there. I hope things look up for you.
Posted by jwall (Member # 22999) on :
My next door neighbor actually pointed out to me that I was only saying "I have lyme disease" and that I REALLY should be saying to people who don't know, "I have late-stage lyme disease which means it has invaded my CNS and brain, as well as my joints, cognitive funtioning...and is very hard to treat at this point." she was hearing me tell other people and was saying that they wouldn't understand the severity of it b/c a lot of people relate lyme with a big bull's eye rash that is caught early and given appropriate treatment and cured. Most of my friends/neighbors were SO happy to hear I "only" had lyme after being so sick for 1.5 years. they said, "now you can take some antibiotics and be fine! That is great news!" well, they are getting the picture now that I have a picc line in. It is not an easy road. People just don't know (I wouldn't have known either) and I believe it's our job to inform as many people as possible...so I do A LOT of talking about it now...even if people don't really want to hear.
Posted by slcd (Member # 5708) on :
About a year after I got sick I was trying to take a nap in my dad's living room when he had some guests. All of a sudden I heard one of the guests ask him and my uncle, "We've heard Lyme Disease is really bad around here. Is it really a problem." My uncle answered, "Well, Sheri has it, but she exaggerates everything..." And my dad said nothing.
This was the same day that I had just found out from the neurologist that I had permanent brain damage from the disease.
![[Eek!]](eek.gif)
Whoa, it could be that too.![[confused]](graemlins/confused.gif)