Others reactions to Lyme and co-infections

Every morning my husband asks, "How are you feeling?" The answer is always, "Not good."

I try to be understanding, but I get where you're coming from. I once snapped at him and said, "Just assume I always feel terrible!" It's true, but I felt bad. I know he's just trying to assess my current status, but I do get tired of answering, "Not good."

And when it comes to other people...I honestly don't know how to answer. I want to say, "Not good", but I know they don't want to hear it. It's been a little over a year and my mother is finally understanding this is not a quick fix. She used to get annoyed when I told her I wasn't feeling good, as if I should be doing more. I still get that, like I should be doing more. I feel guilty too.

Just roll with it. I've also started answering "how are you feeling?" with "Fine" or "Better". Whatever makes them happy. I don't care. I can't stand the way people look at me with pity. It makes me ill. I'm fine or not. Who cares? It's like "weird weather we're having?" It's just small talk. I'm glad everyone wants me to be fine - but I also have a therapist to unload onto. I tell her everything and feel better. The guy at the front desk just wants to hear I'm not dying. OK. I also think everyone is different. Sometimes I tell my husband I'm fine even when I'm not. The only people who are going to understand what you're going through is other lyme people. No one else will get it.

It’s a rough journey for sure and I still haven’t figured out if I love people or hate people for asking/ responding.

You could say - not better yet, my body is fighting a lot of infections, so it’s a war zone right now.

Or if there’s ANYTHING positive you can say, add it. Mine lately has been - “It’s been an awful week, but I drove myself here, so it could be worse.”

“if I’m here talking to you, I’m feeling a little better than being on my death bed last night.”

“Pretty bad but my hair stopped falling out, so yay!”

It also does help to find every little positive. It’s bittersweet that sometimes I’m HAPPY because my excruciating headache or dizziness or nausea lasted “only” a few hours this time. The progress can be slow, so you have to measure in millimeters, not feet.

The first few months are probably the worst, as you learn so much about this disease and are horrified that no one UNDERSTANDS.

Having positive tests was the biggest and most wonderful validation. I can talk in scary terms like “Babesiosis” and “protozoan blood parasite” and “infection of my blood vessels” and people listen. Call it Borrelia instead of Lyme, be as specific as you can with symptoms and research the mechanisms. The more horror you put into it, the more understanding you can garner.

If your problem is you just want people to stop asking, then give a superficial answer and let it go. It does get annoying after a while to know they ask but just. don’t. get. it. So yeah, come vent on the forum. We all get it.

Hi jmeow16,

I totally get where you're coming from. I've lived with chronic illness/pain ( maybe Lyme, maybe Ehlers Danlos Syndrome & then Lyme & co,..) for my whole life. So I've been dealing with the questions for just as long...

It's hard not to get upset & offended ( and yes, even pressured into feeling guilty ) when people ask how im doing, or if I'm feeling better yet...the expectation that I should be better by now... infuriating!

Depending on the person ( and the way they worded the question of course) & my physical & emotional status, I answer in various ways.

If they ask if I'm feeling better- I can quite honestly say- " yes" as I am no longer totally bedridden ( most days) they then typically say- "great! So you're really feeling good now? " and I say, 'no I feel terrible! But I'm still better than I was at my worst point, and if you'd ever experienced the way I felt at my worst, you would understand why I'm grateful for any improvements! "

My mother continually does this to me - especially regarding my diet- which for some reason drives her nuts. I experienced a huge improvement in symptoms from diet change- i still felt absolutely awful & very ill , but it was literally what allowed me to get out of bed long enough to go get my Lyme test & begin herbal treatment etc.

After asking me the loaded ' are you feeling better' question, she inevitably moves on to ' are you still on that diet?' I say yes... she says 'well if you still feel terrible why are you still doing it?'

It's hard to describe to someone without these infections the many layers of feeling awful- and of course the long term aspect of these diseases. And how even feeling one degree LESS awful can be worth making major life changes...

If people ask how I am, i sometimes just lie & say 'ok/fine'etc.
Sometimes I say " the same"- or " you know, the usual...' which can lead to them saying - and how's that? - then I'm stuck saying saying "pretty bad" Or, 'crappy' / 'I feel like I have Lyme!' ' 'But thanks for asking! '
Or some variation of the above...
I then usually try to move into ' and how are you doing ?'

Sometimes the effort involved in even answering is just too much !

I'm really lucky to have one old friend who ( although it took him well over a year to finally begin to understand) I can be honest with. We talk a couple times a month, and it's really a relief to be able to say just how bad things may be.

On the other hand;

I have another well meaning friend ( who's husband has Lyme too,
so you'd think she'd understand...) who even if I answer ' ok' - which is of course an absolute lie- she responds with - ' why only ok???'

Arrghhhh!

But I've noticed something interesting that happens on occasion- sometimes I'll run into a person who is more acquaintance than friend, or someone I don't often see- ( very rarely of course, since I don't go anywhere except the doctors & the grocery store , when I can) and we'll both do the small talk, " how are you? / fine/ ok/ good etc..." dance.

And somehow I'll just know that that's all it is- is a dance. And I'll say " are you lying too? " and they'll say 'yes. '

Obviously that's not usually the way it goes down, especially with the most important people in our lives- and the ones we see the most.

But for me there's something really emotionally freeing & beautiful in being able to have that brief honest Raw connection with another human. Even if it's someone I only know on a first name basis ( if I can even remember that!) .

And even though I doubt we're both struggling/ suffering from the same things.

It just kinda reminds me that I'm not the only one trying to put on a good ' face'. - and probably failing miserably!