Talking About Lyme ... And, the Holidays are Coming

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KB69
Regular Member


Date Joined Jan 2017
Total Posts : 176
   Posted 11/14/2017 1:50 PM (GMT -7)   
I just hit the one-year mark of treating Lyme. It went misdiagnosed/untreated for 6 months. Then, treatment stalled as I transitioned from one LLMD to another who finally diagnosed Bartonella and Babesia.

I didn't make progress until I treated Babs and, thankfully, I have been symptom free from Babs for months. That said, as with so many of us, beating back one infection lets the other(s) rise to the occasion, and I'm now struggling with neurological symptoms. I know have a ways to go in finishing this fight with Lyme/Bart.

My question for you: how do you talk about Lyme with your friends or even your distant family? It's all so personal, I know, but with the holidays coming up, especially, I'm imagining conversations with in-laws asking, "Wow, you're not over it yet?"

I've distanced myself from some of my good friends this year b/c I've been so sick. But, now, even as I'm feeling better, it's hard to have that conversation again and again, "yes, I still have Lyme, and I have a co-infection called Bartonella. It can take a long time to heal from these infections as there is no silver bullet and everyone is different" YADA YADA YADA.

My friends are all well intentioned, but I know there is sympathy fatigue and I hate to burden people with my concerns about my illness. That said, I'm struggling at the one-year mark to stay positive and I know I could benefit from more support (and relying less on my husband, who has been a saint, but is also likely fatigued by all of this).

How do you cope? How do you engage friends and family? How do you talk about Lyme if you've been battling it for a while? I don't know if it's the holidays approaching, my hitting one-year of treatment or what, but I'd love your thoughts.

It goes without saying, I would be lost without the Forum. So, thanks to everyone that has helped me get this far.

PeppermintTea
Regular Member


Date Joined Oct 2014
Total Posts : 80
   Posted 11/14/2017 2:10 PM (GMT -7)   
Hi, KB69 -

Congrats on knocking out Babesia! That can be a formidable beast.

We have been on and off treatment since Nov 2014. Abx first then a-bart and such. I am very familiar with the question "are you better, yet?!" or "you are sick, again? I though you were well?" I know they are good intentioned.

My reply is pretty short. " Lyme is very complex. They still don't have the answers. This might be a life time battle. Things like diet, reduced stress and such help. I'm doing the best I can with where I am at. "

Okay....maybe that isn't the shortest answer. But I say it. And then, redirect the conversation.... "look at your lovely sweater", "your sweet dog", "the food looks so good".

Occassionally, a friend or family member will probe deeper because they feel a friend or family member might have lyme, too. In that case, I will try to listen and educate. But otherwise, I say a couple of things and move on.

Other things I have done... 1) shut down FB and twitter 2) let family/friends know I can't do big stretches of time 3) and learned to accept this is where I am now and that is okay.

Big hugs to you and a happy early greeting to the holiday season (we had our first snow yesterday)! ,

Warmly -

PeppermintTea

Post Edited (PeppermintTea) : 11/14/2017 2:14:58 PM (GMT-7)


KB69
Regular Member


Date Joined Jan 2017
Total Posts : 176
   Posted 11/14/2017 2:23 PM (GMT -7)   
Hi Peppermint,

Thanks for your thoughts. I love the redirection. We all know how many lovely sweaters there are to point out during the holidays!

"Learn to accept that this is where I am now and that's okay," -- there's wisdom in that. I need get there as I think that would make my own understanding of this, nevermind my attempts to explain it to others, easier.

Hugs right back to you, and best wishes for the holidays. Enjoy the snow -- I'm not quite ready for it here in New England!
Kelly

Missouri
Regular Member


Date Joined Sep 2017
Total Posts : 79
   Posted 11/14/2017 5:26 PM (GMT -7)   
I struggle with this immensely. I was stupid to tell people I was getting tested. Now I get to answer questions about it all the time. I wish I could go back and keep my mouth shut.

Two of our friends are in the medical field and one is a pharmacist. I see them roll their eyes when they ask me questions about it. I always wonder what they say to our other feiends behind our back...

Oh well whatever. I just keep my answers short and change the subject ASAP.

At least I didn’t tell anyone at work.

Isn’t it so sad and infuriating the climate the CDC Lyme cabal has created for is?

1000Daisies
Veteran Member


Date Joined Apr 2016
Total Posts : 2000
   Posted 11/15/2017 1:47 PM (GMT -7)   
I don't have the best network. I talk and confide in those who are interested/concerned, and I've quickly learned who those people are. I have wonderful friends in my life, but they aren't necessarily the same friends who I lean on though for our health problems.
My family, for the most part, is not supportive at all - except for one person who is also very sick from it. Not because they don't care, but for example, simply because my mom can't handle to see us suffering so hides in her world of denial/avoidance so SHE can cope with it. It's very sad, but that's the way she is. I know she cares, but she doesn't have a mature coping mechanism.

I'm in an atypical situation where I have/had three kids seriously struggling with this disease. For the most part, I'm finding more people to be understanding around here nowadays. But that has definitely changed from when I first started down this journey several years ago.

My kids can be seriously sick at times. They have missed serious amount of schooling, as well. But when they have a good day and my friends/peers see them, they "look ok", and I have no doubt this just confuses these people. They don't understand the ups/downs, this rollercoaster ride of health. They don't see when they are too sick to get out of bed. And some people are just visual type people, so they tend to not understand as much.

Nowdays, when I tell somebody about our chronic health battle, they may quickly say "oh, I have a friend/sibling/parent/etc who has that and he's been sick for years from it". And then we exchange doctor information. ;) There's a newer understanding now (around here, at least) because more and more people are sick from it and being diagnosed with it (they are struggling though to find doctors who will help them).

That's not to say that I've met plenty of people who don't understand. The least understanding folks I've encountered have been in the medical industry, and I've had some serious epic failures with them. And one very traumatizing hospital stay.

And I do understand the sympathy fatigue. And it's hard to talk to others because they are just lost in my world's lingo (bartonella, babesia, herbals, hbot, immune system, etc).

So, I probably went a bit off-topic from what you are asking. In a nutshell, I don't actually share a lot with others - but that depends on who it is.

Holidays can be very very very hard on me with unpredictably sick kids. I get a lot of pressure for the holidays from one side, and they don't understand how hard it is travel with a sick kid. I've said no in the past, but I wish that side of the family could be more understanding/helpful in regards to this.
Kid#1: Extremely sick for several years, very difficult to treat, but doing great now!
Kid#2: Very sick now despite being treated for years, still very bad
Kid#3: Generally good but relapsing off/on.
Me: Adv Labs positive 2016 (suspected I passed to my kids)-not as sick as others, mostly battling fatigue and yeast issues (heart/kidney issues resolved)
Treating with herbals now.

KB69
Regular Member


Date Joined Jan 2017
Total Posts : 176
   Posted 11/15/2017 2:18 PM (GMT -7)   
1000 Daisies, thanks for your note. I can only imagine how difficult it is navigating this world when your children have Lyme and your battling it, too.

I understand how things are with your Mom. My Mom cares for her mother, who is 101 and lives at home. She's constantly overwhelmed by that so I try not to burden her with too many details about my situation. But, that's a person I wish I could confide in more.

It's really hard when you (or your kids) "appear normal" and everyone thinks you're past this dreaded disease. Most of my symptoms are neurological -- tingling, burning, inner vibration, anxiety -- and those aren't visible. So, I know that puzzles people -- "are you really sick? You look fine." Why go into it at that point. It's too discouraging explaining that, yes, I'm actually still dealing with a lot of scary symptoms.

I send continued strength your way in caring for your family. I have two kids and find it tough just keeping up with them in my illness. You're amazing.

Missouri, hang in there. I try to explain the challenges of this illness to friends in the health care field, too, and they just don't get it. I mean, my PCP doesn't even understand Lyme beyond the standard, "here's 3 weeks of Doxycycline."

PNWBoarder
New Member


Date Joined Nov 2017
Total Posts : 9
   Posted 11/15/2017 5:11 PM (GMT -7)   
Peppermint said it best. Keep it simple and sweet with those not interested. Do your best to push your symptoms into the background.
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