Anyone Else Just Tell People They Have "a Debilitating Immune Problem"?

[spinner]

Im not advocating lying, but im gaining some wisdom in dealing with people who want something from me---usually in the form of coming to a particular event at a particular time at some time in the future. The holidays for example, "WILL YOU BE COMING TO CHRISTMAS" BECOMES a very loaded question for many of us. Because we simply dont know what Christmas morning is going to hold.

Here's what I do. And im not advocating lying. But saying "i have POTS" I wont make it" just doesnt fly in their worlds. Its too non specific and vague.

Dani's post inspired this post, and Ive learned to tell people two things:

1. NO. You'd better not plan on me coming because I have an IMMUNE DISEASE (give them something they can wrap their minds around). If I feel better than day I'll call early and ask if i can still come. If not no dissapointments.

2."The immune disease makes it impossible for me to function, so I have no choice but to wait until that day to see

if im functional or not"

Its a hard fact we all learn that most people dont give a blank about our medical problems. They mainly care about their barbecue and whether you'll be there and be any fun while youre there. This inclues family members.

Its the hardest reality of all, but some of our spouses dont believe we are really "that sick". My own wife has doubted

me and told her friend I might be faking some of it.

This.....while i was in bed feeling like death.

My point being that we have to communicate somehting that people can wrap their brains around and that they accept. Using "POTS" as an explanation may not be working for you. Make them realize that youre essentially disabled, not

mildly inconvenienced because otherwise they're going to think youre not participating because youre mildly

sleepy or lazy.

[kalamazoo]

I just say I have a heart condition as its my main symptom. It shuts people up.

[ramakentesh]

I use low blood volume, low blood pressure or migraines as my excuses. Or I pretend I have something on already

[spinner]

I just say I have a heart condition as its my main symptom. It shuts people up.

Dang, I'd like to use this one, and it would be true with my fluctuating BP, palpitations, PVC's, and low heart rate. But at my age

52, id be afraid people would think I was about to go into cardiac arrest lol and id never be invited anywhere.

But i like your strategy. That would pretty much end ALL wrangling and guilt trips, woulnd it?

[bebe127]

It is so hard to explain to other people without feeling like a total hypo, and looking like one to others. I always have the driving issue. I don't drive very often and when I do, it's only to places I absolutely have to go to. It gets especially hairy when I have driven someplace and then have to explain that I don't drive often!!! I usually tell people that I've been diagnosed with a funky chronic illness that whacks out my nervous system and mainly causes problems with my heart and blood pressure. You're right though, Spinner, people usually don't understand and can't wrap their heads around it, and I think it's even worse when it is family.

I just recently posted about a long lost cousin that wants to "get together" to catch up. I gave her the 'ol "don't drive much, long story" excuse, but told her I'd be happy to catch up over the phone. We'll see how that goes. This is one of many conversations I'm not looking forward to having

[brethor9]

I have simplified my explanation as saying I have a rare nervous system illness that keeps my body from functioning normally (like MS but not fatal). I don't even try to explain the mast cell stuff....its even harder lol.... most people think its just allergies and cant understand how it can make you so sick..... yeah just allergies

Bren

[Gerrik1]

I use to try to explain the POTS but then I just said I have low B/P or Migraunes which I do. But since my POTS have relapes and gotten worse the last few months I say I have a Heart condition and at 51 most people can understand that and go with it.

[Katybug]

I tell them I have a neuro-cardiac issue that makes my heart race and potentially causes fainting. That usually shuts them up pretty quick. LOL!

[lejones1]

These are all such good ideas!

I'm 23, so none of my friends really understand the idea of chronic illness. They're always like "you're still sick?!", "do you feel better yet?!". It gets really frustrating. So I've started just saying I have chronic mono - mine was post viral and I do have elevated EBV levels, so it's sort of true although it's not the main problem, and it's something people my age can relate to. If they're willing to listen I give more details.

[Mydoggielovesme2]

Spinner, I hope your wife is more understanding now. It's took my husband a while to realize just hope bad I felt. I think because I got sick so suddenly. Anyway, I too tell people I have a heart problem that keeps me from doing things. For some reason when you use " heart", they are more accepting.

[Mydoggielovesme2]

Spinner, I hope your wife is more understanding now. It's took my husband a while to realize just hope bad I felt.)))))

Sorry for miss spelling--- I hate this brain fog!!