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Posted 8/18/2018 1:14 AM (GMT 0)
I would be willing to bet that most of us have gone through the “you can’t be sick because you look fine to me!”

I was in my apartment when a false fire alarm went off. Not knowing that, all residents headed outside our 12 story building. I live on floor 7. 7 flights down, 7 flights back up...

Why up? Well, the elevators weren’t working yet, so I told a fireman I was disabled, and instead of asking what he could do to help, he laughed.

I barely made it up. A kind resident on the 8th floor was behind me the entire time helping me. I swear my legs, arms, and lungs, were about to give out, but her kind words making sure that I went slowly until she dropped me off at my floor, were what got me through.

Did I call the city’s fire department administration? You bet I did! I left a message saying they needed to re-educate their firemen, and to call me back.

What’s your story behind someone not believing you’re very sick/disabled? Don’t be afraid to share.

Post Edited (18yearsandcounting) : 8/17/2018 7:37:18 PM (GMT-6)

Posted 8/18/2018 3:56 AM (GMT 0)
That's horrible. And I'm sorry you had to deal with that.

Last month at the beach, we were rolling a wagon holdng all our gear to set up once we got to a site. After walking down a long wood planked access way to the beach, we noticed a long stairway down to the sand. Before getting sick, I would have just picked up the whole thing and lugged it down to the sand myself. But now I can barely make it down a flight of stairs by myself without falling. So, my wife and 12 yr old son had to unload some of the things and tote it down, the two of them. There were quite a few people watching. And I couldn't help but feel ashamed.

Before getting sick, I used to think people diagnosed with chronic fatigue were just lazy. What a wake up call. Just goes to show you most people won't understand unless they have been through or are going through something similar.
Posted 8/18/2018 7:01 AM (GMT 0)

18yearsandcounting said...
I would be willing to bet that most of us have gone through the “you can’t be sick because you look fine to me!”

I was in my apartment when a false fire alarm went off. Not knowing that, all residents headed outside our 12 story building. I live on floor 7. 7 flights down, 7 flights back up...

Why up? Well, the elevators weren’t working yet, so I told a fireman I was disabled, and instead of asking what he could do to help, he laughed.

I barely made it up. A kind resident on the 8th floor was behind me the entire time helping me. I swear my legs, arms, and lungs, were about to give out, but her kind words making sure that I went slowly until she dropped me off at my floor, were what got me through.

Did I call the city’s fire department administration? You bet I did! I left a message saying they needed to re-educate their firemen, and to call me back.

What’s your story behind someone not believing you’re very sick/disabled? Don’t be afraid to share.


Well I did look sick when Lyme symptoms came on - I lost 14 lbs in a few weeks time and I looked sick and fragile.
My left arm was so weak that I couldn’t close the car door - I had to reach over with my right arm and close it.

But as time went on and I started treatment, I gained weight and I didn’t look so sick anymore - my colour came back and even my eyelashes!!

I’m sure some people have talked behind my back wondering why I’m still not back to work and I look fine now but my true friends who really know me are supportive and understanding. I hope they’re sincere
Posted 8/18/2018 8:11 AM (GMT 0)
Lucky who have understanding and suppkrtive friends.
I have left with couple( which is I guess is not bad at all)
Others are just can’t bear me being sick and weak,
As they all used to see me strong and powerful
get-it-done girl.
I have to shamefully admit, before Lyme I was not believing in
chronic illnesses myself.
My approach was “with your power of the mind you can move Mountains”,
and “All you need is faith”.
I was very wrong.
Yes, mood and intentions are important,
but it’s not only this.

Now I have to advocate myself and prove to people
that I am actually sick.
And not just tired,moody, lazy, etc.

Recently I was herxing very bad and had to cancel meeting with friend.
So I’ve explained very gently what’s happening, she said
“so we can move it to couple hours later? take an advil”

Haah 😖😫
Posted 8/18/2018 12:05 PM (GMT 0)

Hoagie said...
That's horrible. And I'm sorry you had to deal with that.

Last month at the beach, we were rolling a wagon holdng all our gear to set up once we got to a site. After walking down a long wood planked access way to the beach, we noticed a long stairway down to the sand. Before getting sick, I would have just picked up the whole thing and lugged it down to the sand myself. But now I can barely make it down a flight of stairs by myself without falling. So, my wife and 12 yr old son had to unload some of the things and tote it down, the two of them. There were quite a few people watching. And I couldn't help but feel ashamed.

Before getting sick, I used to think people diagnosed with chronic fatigue were just lazy. What a wake up call. Just goes to show you most people won't understand unless they have been through or are going through something similar.

Thank you. I was pretty shocked.

I understand how you feel, regarding the internal shame you felt at the beach. No one believes we could possible sick unless we’re toting an IV stand with an infusion around. Thanks for sharing. I felt pretty low last night. 🙂
Posted 8/18/2018 12:11 PM (GMT 0)

Girlie said...

18yearsandcounting said...
I would be willing to bet that most of us have gone through the “you can’t be sick because you look fine to me!”

I was in my apartment when a false fire alarm went off. Not knowing that, all residents headed outside our 12 story building. I live on floor 7. 7 flights down, 7 flights back up...

Why up? Well, the elevators weren’t working yet, so I told a fireman I was disabled, and instead of asking what he could do to help, he laughed.

I barely made it up. A kind resident on the 8th floor was behind me the entire time helping me. I swear my legs, arms, and lungs, were about to give out, but her kind words making sure that I went slowly until she dropped me off at my floor, were what got me through.

Did I call the city’s fire department administration? You bet I did! I left a message saying they needed to re-educate their firemen, and to call me back.

What’s your story behind someone not believing you’re very sick/disabled? Don’t be afraid to share.


Well I did look sick when Lyme symptoms came on - I lost 14 lbs in a few weeks time and I looked sick and fragile.
My left arm was so weak that I couldn’t close the car door - I had to reach over with my right arm and close it.

But as time went on and I started treatment, I gained weight and I didn’t look so sick anymore - my colour came back and even my eyelashes!!

I’m sure some people have talked behind my back wondering why I’m still not back to work and I look fine now but my true friends who really know me are supportive and understanding. I hope they’re sincere

I am glad you’ve gained weight and your color and eyelashes have come back. It’s inevitable that people are going to talk behind all of our backs, even family, but I’m happy you have a good group of friends for support.

I am going the other way now. I started out gaining a lot of weight due to the unchecked hypothyroidism we all get from having Lyme disease. Now I’m wasting away. 2-3 pounds every few weeks. I’m still in my normal weight range, so that only registers as an alarm to people who know me.
Posted 8/18/2018 12:18 PM (GMT 0)

arieco said...
Lucky who have understanding and suppkrtive friends.
I have left with couple( which is I guess is not bad at all)
Others are just can’t bear me being sick and weak,
As they all used to see me strong and powerful
get-it-done girl.
I have to shamefully admit, before Lyme I was not believing in
chronic illnesses myself.
My approach was “with your power of the mind you can move Mountains”,
and “All you need is faith”.
I was very wrong.
Yes, mood and intentions are important,
but it’s not only this.

Now I have to advocate myself and prove to people
that I am actually sick.
And not just tired,moody, lazy, etc.

Recently I was herxing very bad and had to cancel meeting with friend.
So I’ve explained very gently what’s happening, she said
“so we can move it to couple hours later? take an advil”

Haah 😖😫

A couple of supportive people around you is all you need. Don’t feel bad about not believing in chronic illnesses until you got them. Society just doesn’t understand, and the failure of that starts with the medical community. They aren’t taught to treat any chronic diseases except cancer, and maybe a few more...diabetes, I suppose too. It’s not really their fault either, because two very powerful men shaped the medical community into what it is today...a travesty.
Posted 8/18/2018 12:27 PM (GMT 0)

sandyfeet said...
What an awful experience 18yearsandcounting! And what a wonderful neighbour you have, she sounds like quite a blessing. And good for you, calling the FD, I never have the emotional strength to do that sort of thing, and yet I think it is so important to raise awareness. Thank-you!

This illness has definitely made me more aware of the reality that possibly everyone around me is dealing with something - some invisible stress that I may know nothing about - I try to listen, and remember, and ask more these days.

I think for me what hurts the most for me is the people closest to me who just don't get it. It's a catch 22 really, the more I work hard to keep up the more I get 'you seem fine' and when I can't I feel like a depressing lazy complainer. People just don't want to know really and I can't blame them.

I think that’s very good of you to look at people the way you do. It’s something we all need to do, yet it is extremely hard to do, and bravo to you for thinking kindly of everyone like that.

I have lost everyone but my Dad, Aunt and Uncle, and hopefully not my niece and nephew. My Dad is my rock. I have a couple of good friends, yet I’m too far away from all of them now. You’re right. They don’t want to hear about our illnesses anymore and start to question them.

Lol, well then, I have loads of emotional strength, because I am always one for letting people know what could be done better to serve the next person, so they don’t have to go through what I did. I laughed because my Dad keeps telling me to pick my battles; that my body doesn’t need the stress of all of that, and I can’t change the world. 😄
Posted 8/18/2018 12:48 PM (GMT 0)
I'm sorry to hear that. But it's nice that there was a silver-lining with your kindly neighbor.

For me, luckily, I haven't had too many times where people have straight-up not believed me (at least they haven't said it to my face). What's happened more often is that I've had people who've told me I need to push myself more, ie my problem was not my health condition but it was my lack of will to be better and that if I tried harder I could transcend my condition. I always found that infuriating, one reason being that I've always considered myself a gung-ho give it 100% kind of person. And I've given my all to survive this and get better, so to have my will questioned was the ultimate insult. Often times the people who would make such comments were people who had only met me after I'd fallen sick, people who had known me before I got sick never brought up such a critique.

Do I have a chip on my shoulder from those type of experiences? yeah, a bit. But I tap into those memories whenever I need mental fuel to push through something smile
Posted 8/18/2018 2:20 PM (GMT 0)

sebreg said...
I'm sorry to hear that. But it's nice that there was a silver-lining with your kindly neighbor.

For me, luckily, I haven't had too many times where people have straight-up not believed me (at least they haven't said it to my face). What's happened more often is that I've had people who've told me I need to push myself more, ie my problem was not my health condition but it was my lack of will to be better and that if I tried harder I could transcend my condition. I always found that infuriating, one reason being that I've always considered myself a gung-ho give it 100% kind of person. And I've given my all to survive this and get better, so to have my will questioned was the ultimate insult. Often times the people who would make such comments were people who had only met me after I'd fallen sick, people who had known me before I got sick never brought up such a critique.

Do I have a chip on my shoulder from those type of experiences? yeah, a bit. But I tap into those memories whenever I need mental fuel to push through something smile

I’m glad you were able to turn a negative experience into a positive one! 🙂 What you described happened to me too. If I just get fresh air, if I exercise, if I go out with people, I’ll feel better. Ok...not when I’m herxing. I do see the benefit in those things, because being trapped in your own home is not good for our mental state. Since I moved downtown, there is many opportunities for me to do things I couldn’t when I lived in the suburbs. Sometimes pushing yourself, except when you’re very ill at that moment, help tremendously. I definitely understand your point of view. I suppose we both have turned negative experiences into positive ones. 🙂
Posted 8/18/2018 2:32 PM (GMT 0)
Exactly! I believe in those things as well, but like you say, especially when I'm herxing and herxing a lot I can't do much. For many years I was bedridden, but as I got better with therapies I could gradually expand my endeavors. I've always tried to be as productive as I can, do physical activity within my ability (I used to do a lot of sports and weight lifting), and work to the best of my ability.

Lately I had to take a break from weight lifting because I'm on aggressive therapies that are flattening me. Very effective, but very taxing, debilitating neuro symptoms. The weight lifting is actually awesome, this last year was the first year I could really get after it, lots of powerlifting. It also makes me feel good about myself. After so many years of not being able to do it, physically crushed and a prisoner of my body, there was deep satisfaction in being able to use my body and pushing it in physical endeavors. It made me feel not sick, and maybe, just maybe, I used those critiques to push myself. Kind of petty? yeah probably, I mean in the end who cares what people think. But hey, I'm happy to use any motivation I can in this world, even if I'm magnifying inconsequential critiques, hehe smile
Posted 8/18/2018 11:57 PM (GMT 0)

sebreg said...
Exactly! I believe in those things as well, but like you say, especially when I'm herxing and herxing a lot I can't do much. For many years I was bedridden, but as I got better with therapies I could gradually expand my endeavors. I've always tried to be as productive as I can, do physical activity within my ability (I used to do a lot of sports and weight lifting), and work to the best of my ability.

Lately I had to take a break from weight lifting because I'm on aggressive therapies that are flattening me. Very effective, but very taxing, debilitating neuro symptoms. The weight lifting is actually awesome, this last year was the first year I could really get after it, lots of powerlifting. It also makes me feel good about myself. After so many years of not being able to do it, physically crushed and a prisoner of my body, there was deep satisfaction in being able to use my body and pushing it in physical endeavors. It made me feel not sick, and maybe, just maybe, I used those critiques to push myself. Kind of petty? yeah probably, I mean in the end who cares what people think. But hey, I'm happy to use any motivation I can in this world, even if I'm magnifying inconsequential critiques, hehe smile

That’s great you’ve been able to get back to the gym! 😀 I can’t wait until I can get back. I used to go 5 days a week. That 7 flights up last night are making their mark on my legs today. It’s horrible when you get to that bedridden point. A prisoner of the body and home.
Posted 8/19/2018 12:40 AM (GMT 0)
I'm sorry. That fireman needs to turn his hat in!!

Actually, right now I do look sick - the way I walk, the way I move, wearing a mask in some buildings because of mold and chemical sensitivities. But when I see people who know me, they ask how I'm doing. I tell them I'm still struggling and haven't made much progress. Invariably, they exclaim, "Well, you look great!!" I do look better. I've lost weight (was chunky before) and have a great tan from staying outside as much as I can to avoid moldy buildings and toxic chemicals, LOL!!!
Posted 8/19/2018 1:31 AM (GMT 0)

WalkingbyFaith said...
I'm sorry. That fireman needs to turn his hat in!!

Actually, right now I do look sick - the way I walk, the way I move, wearing a mask in some buildings because of mold and chemical sensitivities. But when I see people who know me, they ask how I'm doing. I tell them I'm still struggling and haven't made much progress. Invariably, they exclaim, "Well, you look great!!" I do look better. I've lost weight (was chunky before) and have a great tan from staying outside as much as I can to avoid moldy buildings and toxic chemicals, LOL!!!

Sunshine is a great natural mold treatment. I wear masks in doctors offices. No way I’m sitting there with a compromised immune system. I never thought about doing it for mold and VOCs! Great idea! 😃

I think the fireman thought I was flirting with him? Probably because I said that one of them is going to have to carry me up, but really!? I’m truly disabled! Ugh...we’ll see if the department administration calls me back on Monday.
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