It's the disease we don't want to look at

I recently started working at a small, liberal arts college. The school is my alma mater, so I know quite a few of the faculty, staff, and even some students. Not many people know that I have Lyme; I was only diagnosed a few months ago. Every time I tell someone ... I don't know how to explain it. It feel like this wall goes up, between me and the person. Like, almost like I've told them I'm dying or something.

Today at lunch I was feeling tired. I wasn't thinking about the Lyme, just about being tired, and I said, "whoow, I'm really tired today." My friend said, "yeah, me too, what's your excuse." He was just kidding, of course, but it hit me like a ton of bricks. "oh, well, I have Lyme disease, actually." What do you say after that?

People keep saying to me, "your cheeks have been looking so rosy lately, have you been out a lot on sunny days?" "No," I reply, "I'm taking doxycycline for Lyme disease and it makes my skin sensitive to the sun."

I don't want to lie to people, to alienate myself from them by hiding the fact that I have Lyme, but I also feel like, it makes people so awkward, like, they wish that it would just go away, which makes me feel like they wish that I would just go away.

People sort of try to act normal about it, but I feel like, in a way, they've crossed me off their list a little bit. Like, well, she's infected. Like, she's damaged, she's done for.

I just feel really alone. I wish that when people heard, they would just hug me, and nurture me instead of making me feel like they're never going to touch me again.

I wish people were more open about Lyme disease, and talked about it more. There seems to be some weird stigma around it - but it seems like that's mostly because people just don't want to see it. They don't want to admit that it's everywhere, and that it could happen to them. Like they think that if they ignore it, it will go away.

Anyway, I just wanted to share this in a place where people might know what I'm talking about.

Thanks.

agreed.

nice to hear from you.

Thanks.

So sorry. So many of us know exactly what you're talking about. If I say, "I can't go on; I'm too tired," people say, "Of course you can. Just push yourself a little." I know the "I'm tired too" line so well. And so many of the people who know me talk about my Fibromyalgia.

A lot of people also say, "You look so much better(!)" when I'm feeling like absolute crap.

Some folks have never even heard of Lyme Disease. And get this, I've talked to doctors who have never heard of Babesiosis or Erlichiosis.

Eurytopic, one thing you might want to do is look up "The Spoon Theory" on the internet. Print some copies out. That really helps some people understand what you're going through.

I've sort of given up speaking to people about Lyme.

The other thing I do that has actually helped me is that when people say, "You look so good," or "You look so much better," I just say, "Thank you," smile, and go about my business.

Sometimes trying to explain your illness to people just adds fuel to the fire, because you explain, they don't believe you, and then you end up having to defend yourself. Plus people (and doctors) will think that you're somaticizing, and that you're a hypochondriac.

One thing to keep in mind is that (a) most people forget that they're mortal, and don't want to be reminded of it, and (b) PEOPLE are AFRAID of chronic illness and death.

Now if it's someone you're really close to, or a significant other, that's another matter entirely. Bring that person with you to your LLMD appointment. You need to be taken seriously by a spouse, parents, or your doctor. Print out that information sheet that's available on Lymedisease.org and bring it with you to your doctor's appointment. As far as the other people are concerned, tell them (in your mind) to go take a flying you know what at the moon.

Margaret

I agree with everyone its very difficult to talk to people about. People in general don't understand the severity of the disease and the pain and suffering it causes people. I find it quite difficult to explain being young, just because people my age are generally healthy (even the ones that treat their body like garbage).

That's why this place is so great because we can all understand what each other are going through.

LC

I tell quite a few people just so they're aware that it is here and they could be at risk. Whether or not they keep it in mind is up to them. Some day I'll do a tick sweep on our land to see if there are any carriers, then I'd want to go to the neighbors with some fliers to tell them they are in this area and what they need to watch for. There are some families that have lived on this street for a couple of generations and as far as I know, nobody is infected yet, but there are a lot of birds, rodents and deer (not many) that could bring it here. I did see a deer on our land that was very ill, but she took off when she saw me.

One idea would be to wear the green wrist band, (what I meant to say when I wrote this!) then maybe people would ask about it. A lyme group here passed them out one time. Here's an example. http://www.fundraisingforacause.com/lime-green-silicone-bracelets.html There area others with a different saying on them (on other sites). There are bumper stickers too.

I don't mind being alone, but I mind feeling alone.

I often wonder why people ask how you're doing when, after the question, they clearly show that they are not interested. I prefer them saying 'Hi! Nice weather isn't it', instead of 'How are you?' and then wanting to walk away.

I was so pissed at someone I know. We are together in an association, worked a lot together for years. Saw her when doing some groceries, she was asking how my health was. I gave her the whole story, although her body language was screaming 'I want to walk away!!!' - she got stuck with me for 10 minutes - I felt like being mean that day I left with a satisfied feeling (had a lyme rage moment).

She had been provoking me for a long time, rolling her eyes, giving me angry looks when I couldn't function anymore in the association. One day she even said it couldn't be all that bad.

Many people around me don't know what I have, the ones that do, only few are interested, others just ignore it. They ask how I am, I answer them in a short way, like 'I had better days, lots of pain, but still continuing the battle', no reaction at all.

The thing I don't understand: if a friend tells you he/she is sick, but you don't know the illness, you go and have a quick look on the internet what exactly is going on. That is how I am, but I came to understand that this is not the usual reaction.

 

LOL! Well, I guess I'm just a loud mouth!! I would & do tell anyone who stands still long enough - not about me, but about these diseases, although I do use my experiences as examples of what I'm talking about. I kind of felt sorry for everyone around me for a while, but not enough to stop!

Now, most everyone who is still willing to talk to me knows at least the most basics - I also intend on starting a local information/support group one day soon. It ought to raise a lot of eyebrows with that, since no doc's here will admit that a bulls eye even means anything!! Oh well!!

I think we all know that saying that goes something like this: when down, you'll find out who your true friends are. That's what happens. When a person is quite ill for a long period of time, people just sort of don't know how to handle it - what do you say to a person that can't find anything to really help them feel better in the short term, forget the long term! We live in an instant gratification world now, so people's attention span isn't very long usually if it doesn't affect them directly. Besides, most likely most of us here couldn't hardly imagine living through this before we had to, how can anyone else understand unless they've been through this as well. Just trying to describe the complete exhaustion is hard enough, when you start adding in more, well, it sounds more like a science fiction book than reality is how I see it.

The best news is that this in one of many places that we can go to and find those that do understand and where we can find the support we need.

I'm so sorry that you are in a position that you feel the need to do this, skBM, We all have to make these choices. In a way, I've been blessed to not be able to work for many years - I don't know if I could not say anything!!!

I too hope that one day soon you can say that you used to have Lyme and can tell others!

My doctor told me that people who don't have Lyme truly do not "get it." In my experience, I told a lot of people in the beginning, only because I had so many people around me who were wondering if I ever "found out what was wrong."

Yet, once I told them it was Lyme and really explained how I was feeling, physically, they stopped calling. I had one friend from teaching who was my buddy- we went out all the time and taught in the same school. As soon as this evolved, she disappeared. I invited her to my family's house- where I am living now, and she got back to me weeks later, then said she couldn't make it.

I have now caught myself biting my tongue when talking to people I've just met. I'd rather keep it to myself. It also makes it less draining to have to keep talking about it, because I'm really tired of it being my conversation starter. I don't want to be identified as "the lady with Lyme."

On the other hand, my own parents, who had very little insight, have come a long way with their understanding. My dad read my symptoms calendar one day and said he had no idea that Lyme could do all that. My mom has even come around and said she had no idea how prevalent it is. I live in PA, and in a county that has, I believe, the highest incidence of any area in the U.S.

So, maybe it is just wise to use discretion with what you reveal. I always liked the saying "The truth will do," and I still believe that.

I'm just more cautious now with how it's revealed.