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

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.

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

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."