Giving Up My Seat

[jump]

Hello all,

This may sound like a silly problem in light of all the much more serious things everyone here deals with, but lately I've been feeling really upset/guilty/distressed about this.

I LOOK like a very healthy young woman - I don't need to use a cane or a chair, and when I walk into a room I'm not obviously ill. In fact, many people in my life (some of my co-workers, some of my acquaintances) don't even know I have dysautonomia, in part because I try to hide it well (I feel self-conscious) and in part because I'm lucky enough to still be functional. Anyway, I often find myself in situations where I MUST sit - I start feeling very unwell and on the verge of a faint, so I take a chair. If I'm somewhere public - on a bus or train, or at an assembly of some kind - I feel really guilty because I feel like people are looking at me and thinking, "Why is that young person hogging a seat instead of offering to someone else?"

Recently I was at a political event that was very hot. There were limited seats. I had had doubts about going at all, but it was for a cause I had worked very hard for, and I wanted to be a part of this event. So I went, but once I was there I realized it was maybe too much for me; my heart rate was completely out of control, and what is more, I was alone (no friends or family with me). I found myself a chair in the shade and started to feel at least tolerable. I knew I needed to sit or else I'd faint; I also knew I couldn't drive home until my hr had calmed down some.

Meanwhile, the area began to fill up, and many elderly people arrived long after the seats were filled. All around me people my age were jumping up to offer their seats. I felt so embarrassed! There was a part of me that wanted to yell, "I have a disability, I have to sit!" I just felt so badly, and I felt like everyone was looking at me critically. I would have offered to sit on the ground, but it wasn't permitted -- I either had to hold on to my chair or stand, and standing (and walking, at that point because of the heat) was out of the question.

I know there's probably no solution for this. *I* know I had to sit and I really had no choice. I know I couldn't really have done anything differently. But I still feel so badly about it, and these situations always make me feel so self-conscious.

Anyway, I just needed to vent to people who understand.

[erikainorlando]

I know what you are saying even tho I am no longer that young (I am 46). But...I in addition to haing to sit, need to put my feet up so if I am with friends or at a meeting that is relievely informal I pull up another chair and put my feet up. I know most think I am a slouch but I feel so sick I am just not caring lately as otherwise I can't attend!!

For some reason, putting my feet up on another chair helps alot!! My feeling well and your feeling well (and not fainting) is worth a lot more than what others think...but I still forget!! I think most of us go thru this...

[vemee]

I know how you feel. Being a man it is expected that I be the one who gives up my seat. I usually do unless I am already feeling bad and just don't care at that point.

[Broken_Shell]

Thank you for sharing your experiences and thoughts. I feel the same way, as I am sure others on the forum do. Even though we look "healthy", it is important to remember that it is easy for others to misjudge us. I think I may have mentioned this in the past, but I had a professor once who used to say "to assume is to make an *** out of u and me". At least our experiences can help us not to make judgements and assumptions about others.

~ Broken Shell

[janiedelite]

I totally understand. I have to use the electric carts at the grocery store. I've tried to shop by holding onto my shopping cart and using my seat cane when I get too tired, but I get too much brain fog and often forget which aisle I need to go to next nevermind being able to keep track of prices and stay in budget! For a while, my local discount grocery store had very few electric carts available and I'd often get rude looks from elderly folks if I was using one of the few precious carts. So I started shopping at a different grocery store, which was more expensive, but I needed to have access to the electric carts without feeling like some little old lady was going to miss out on her shopping because of me.

Since then, my local cheaper store has gotten more electric carts!

[dawson20]

It's less embarrasing than passing out in a public place believe me...

You owe nobody an explanation. it's a hard place to get, but you will get there.

in the end none of those people are going to remember you or hte fact that you took that seat up 2 days from now, so why should you remember?

[MelissaCrystal]

This is so hard for me because I was commuting every day by bus and underground train (BART) and would always need to sit or else I'd be standing for sometimes 20 minutes. It's always packed. I've sat on the floor before, and people looked at me and I told them "Sorry, I have a heart condition" and then smiled and gave them a sort of "oh well" kind of laugh. This is so embarrassing for me when I get a seat and people expect me to give it up because someone older than me comes along. I'm 22, healthy looking, so it's hard. I've given in before and said, "Oh gosh, I'd offer my seat but I have a heart condition and I'm nauseous right now, is there another seat for me somewhere...?" And I sort of look around, looking like there has to be some free seat somewhere I can switch to, and someone else usually gives in and gets up for me. I try to be sweet about it. There's just no way I can stand for that long, and I hate actually asking for a seat. I always sit on the floor before I ask for someone else's seat. It makes me look so stupid, but I don't care anymore. I usually just giggle about it so people think I'm cute and not ashamed or something rather than a weirdo or embarrassed about it.

[all4family]

I understand where you are coming from. Some days I would just like to wear a sign that says "I'm sick!" I have had the same thing happen to me as what thankful describes in the store. But what others say is so true. It really doesn't matter what others think. It matters more what you need to do to get along in your life. I have dealt with a lot of critisizm, but found that when it quit mattering to me what others thought I felt a lot better, and was able to enjoy my life a lot more. You deserve a life too.

Suzy

[iheartcats]

Totally understand. It's almost if you're under 50 and look healthy people think you're weird clamoring for a seat. :/

Even family doesn't quite get the sickness. Yes, I look ok usually. Yes, I take meds to reduce my heart rate and it helps. Yes, I still feel fatigued/dizzy/weird frequently and nothing is curing that. It's a hard disease to explain, too, so I guess the 'heart condition' is good enough for brief encounters. I think I'll steal that, Melissa!

Just know you're not alone, Jump. I know how you feel.

[pat57]

Its not about the seat its about being cared for and "we" are not. Therefore it is appropriate to

make sure YOU take care of yourself. Those people need to know the truth and that is that things are not always what they seem,

so tell them, you do them a favor.