What to say to others about your Lyme Disease

I have used the "Feeling pretty beat up but working on it" kind of thing to good effect.

In response to "How are you?" I often say, "I'm making some real progress". People really respond to something positive. I think they can get a handle on feeling like they can help you feel better if you are headed that way already. Some days it is on the verge of being a bit of a white lie!

A few months back I met another severely Lyme-debilitated person at a party -- I had to move away from her after a short while. Her negativity about her disease was sucking the soul essence away from me!! She had not learned the lesson to be briefly informative about her situation and then move on to something else.

A lot of the questions I get are really coming from an honest lack of knowledge so I try to liken it to other diseases that they know more about.

Q: But you're just on antibiotics so that's no big deal, right?
A: Well the length of treatment, combination and dosages makes it rather like being on chemotherapy with many of the same physical and mental effects.

Q: So what do you mean it effects you neurologically?
A: Well you've seen people with Parkinsons and MS, at its worst, Lyme does the same things, but it's reversible.


Well, this is a start!

Whether to wear a mask or to let it show is a choice I think we all have to make. I wore that mask for many, many years now, so I can certainly understand those who choose this route - but for me? Well I just tell people the truth, but keep it short and sweet.

How are you? Hanging in there (with a big smile) on the good days, and on the bad ones - "hanging on - I woke up so that's a good sign!" or something like that. If they want to actually know how things are going or what is wrong, I start with "I have quite a few tick-borne infections, like Lyme Disease". It's usually pretty obvious if they feel like they just opened a door they want to shut just as quickly as they can! That's okay too.

Then there are a few that want to know more. I still try to keep it really simple and straight forward. If they really are interested, I always invite them to visit this site - they can read the 'New to Lyme?" thread and get all kind of info!!

There have been a small handful of people for me that I have over-heard a conversation when they were talking about so-and-so and they start listing the things that person is dealing with and it sounds like they are reading from our 'Master list' of Lyme symptoms! For those people, I just say excuse me, but I over-heard some of your conversation and I wanted to suggest that you look into Lyme Disease (or which ever infection the symptoms match up with) as I have it and it sounds as if you are describing what I live/did live with. I've had several people thank me with enthusiasm!!

Most than anything I believe we need to be available to answer any questions someone has about TBI's should they ask, other than that, everyone has their own style.

I've found quite a bit I have been able to use on this site and I'm glad I could give something back. Thanks for keeping the discussion alive.

I'll second the strategy of comparing treatment to chemo. I think I've called it chemo-lite or Jr before, in deference to the fact that I assume that as bad as this gets, I'm pretty sure chemo patients have it worse. That's what I've told myself on the worst nights when I literally feel like I'm dying. When it seems like any of the breaths I take could easily be my last I try to console myself- at least I'm not in chemo.

Don't be too quick to condemn your friends hopehere. It's a complex psychological process when someone hears one of their friends is ill. It's hard to see someone they might have known as a vital, energetic person get turned into a a shadow of themselves. Some people can't handle the emotion or are afraid they won't know what to say so they just avoid the situation.

Its doubly complex because it's such a mysterious thing you are telling them. If you tell someone you got in a car crash and lost a leg then it's relatively easy for them to comprehend the situation. They know what to say to you, they know what to expect from you, they know how your life will be different and know how your friendship might change. Lyme is so much harder to quantify in all those regards.

You should give at least some of them a chance to come around. You are forced to fight for everything that makes you the person you were while battling Lyme; it may be a struggle to maintain your old relationships as well.

Hopehere said...


I am really finding out who my true friends are for sure!! It's only been 2 months since I received my diagnosis, but over 1/2 of the 'friends' I thought were friends, have turned their backs on me and won't EVEN call me, email, text, facebook or come over!! Nothing!

I also found that the ones who 'act' like they are concerned, they have actually used the info I've given them and used it against me with talking about me behind my back! We're adults people!! REALLY?

'They' have no idea what I'm dealing with, thinks I'm having a pity party and feeling sorry for myself. Thinks if I "just got off my butt" that I wouldn't be as bad!

I'm so sorry you're going through this. I went through this a while ago. Normally when you lose a friend bc of a disease, it's because they have a disease that's resulted in death. Leave it to Lyme to make us lose friends because of our own illness! I have lost many friends (particularly those who are only interested in going out to bars 24/7 who now think I'm the most boring person ever because I can't) but as far as the close friends who simply don't get it...I still try to keep in touch. I just accept that they are who they are and we can still talk about normal things. Does hurt though when your best friend of 24 yeara never once asks how I'm feeling, and only ever looks forward to me regaining my health so I can go out for drinks again.

At least here in NY, Lyme is so prevalent that when I mention it to anyone they either say "I have it too".....or.....they know someone who does or have heard about someone who does.

They even know who the LLMD's are and will ask who I'm seeing.

Empathy abounds.

Interestingly, when I'm in Dr. C's waiting room, there are usually 3 to 4 other patients there. And we all sit in utter silence, never discussing.

I guess that's because we know the score by now....and find relief in NOT having to talk or explain. It's all a given.