Depressed

[pagandialysis]

I was at Subway a little while ago. I took off my jacket and other winter gear to sit down and eat. I guess I must have pulled my shirt sleeve up. I was in the middle of eating when the lady at another table who was facing me saw my dialysis access (I have a huge scar from my elbow to armpit from a basilic transposition). The instant and involuntary look of absolute disgust twisted her face. She apologized but I couldn't finish eating and I can't get that image out of my head.

 

[MooseMom]

What exactly did she say when she apologized?

[pagandialysis]

"I am sooo sorry, I didn't mean anything by it."

[willowtreewren]

I'm sorry that this ruined your meal. 

Next time, you might educate her about your fistula. Carl's was HUGE!!!!!! It looked like a rope (or snake) attached to his arm. You can imagine some of the comments he got. But it was his life-line. So, he kind of let those comments roll off his back.....

Aleta

[willowtreewren]

Huh. I wonder why that picture turned out upside down? 

It's a alutsif! 

[iketchum]

I do not think you should take it personal that someone finds the scarring disgusting. We, as dialysis patients, have had so much happen to us we are used to it. Most of the time our disease is invisible and you get the ' oh you look so good' stuff. Some of our fellow patients have big honking fistulas, not something to be ashamed of. I am sorry you were hurt by the lady's reaction.

[Angiepkd]

I always try and hide my arm. Never wear short sleeves in public unless it's just too hot not to,  I get that people are curious, but they don't have to be rude. Try not to let it bug you. Sometimes I just start a conversation with them about dialysis. They usually quit staring after that lol! Now I have the giant fistula arm and a neck catheter, so I get the "she must be a cancer patient" looks of pity. I just try to laugh it off. Sorry your meal was ruined. Hang in there!

[Jean]

I am sorry that happened to you. Try not to let it get to you. Not a whole lot you can do about it anyways.

[Dman73]

When I swim at the Y and share a lane with someone else quite often I noticed that the other person goes to another lane. That's fine with me because I have the whole lane to myself but it is really not fine.

It is what it is and life goes on and over time you develop a thick skin. I would probably do the same thing if the situation was reversed or if an alien started swimming in my lane.

[amanda100wilson]

Mine is not ropy, but I still get the look and then HHD quick look away, and don't like it.  Not a lot you can do, other than educate.

[jeannea]

At least she did apologize. I think she really didn't mean to be rude. I'm sorry that happened.

[MooseMom]

At least she did apologize. I think she really didn't mean to be rude. I'm sorry that happened.

I can't help but imagine that she probably felt really embarrassed.  Sometimes we can't help our initial reaction to things.

I hope you are feeling better today, pagandialysis. 

[pagandialysis]

Thanks everyone, I am feeling better about it.

amanda100wilson: Mine isn't ropy like that either, though I have two small balloons. I am extremely thankful that they are smaller than most I have seen.

[tzoutzek]

Hey,lreally feel for you as l stayed home for 2 years for the same reason out of shame,until l saw an anorexic girl on the beach& that just gave me strength to move on.

[pagandialysis]

Hey,lreally feel for you as l stayed home for 2 years for the same reason out of shame,until l saw an anorexic girl on the beach& that just gave me strength to move on.

I'm sorry to hear that hun though I'm happy to hear that you are doing better.

[Jean]

Glad you are feeling better about the whole thing.

[RichardMEL]

I have a massive... throbbing.....


.. fistula

and big.... two big....

... aneurysms .... from all the needles.

I do not hide them. I'm more concerned with putting sunscreen on there than hiding it. if it's a hot day I'm going to go in shirt sleaves.

I am not going to let those people out there upset me with their staring or whatever. It says more about them if they're disgusted I think. The woman apologised for her manner, and at least that was owning up to it and I give her credit. Yes, it would have hurt for sure but you know how do very obese peopl feel? or those who need to use mobility scooters (maybe some reading this right now) or those with tourettes(sp?) or some other condition. We can't help it. it's what we have.

I've had all kinds of things suggested to me about my fistula - I had one guy in hospital (I guess fairly reasonable) stay clear of me because he honestly thought they were infectious boils on my arm - just as well as he was a slimy drug dealer I didn't want near me (long story!). Another time someone asked me if  needed urgent care or something.

I ad one guy at a Hungry Jack's (Australias Burger King) come up and actually ask me what they were. Not rudely but politely and honestly curious.

If someone asks I'll explain. Usually they go all shy and kind of "oh you poor thing" etc. I don't mind explaining if someone's polite, and I believe education is always going to be better than someone making up their own story (I am certain MANY people have thought I was a drug user).

I'm not a charity or anything. Right now I am doing well.. it is what it is. It's part of my life. It's nobody else's business really.

If people want to be shallow and judge on appearance... so be it..  not the sort of people I would want to know anyway.

my 2 cents.

[Sugarlump]

I agree with rich, education is the answer. (Lots of people are ignorant about dialysis )
My three year old grand daughter stayed with us at the weekend. She had great fun putting her fingers on my fistula and feeling the buzz.
It wasn't ugh or yuck but curiosity to know why my arm had electric in it!!!
She also came with my partner to drop me off at dialysis and watched me sitting in chair, being hooked up to a machine and the blood being cleaned.
Again her reaction was curiosity and interest.
She came home and told her Mum all about Nanny's hospital where there's a machine that cleans blood. And how the blood goes in and out of my arm.
Even at three and a half she understood the basics!

She know has a small knowledge of dialysis and educated to understand that is how i stay well.
Which will in turn help her educate other's opinions. 

[RichardMEL]

That's so cute. At that age it is good too because whatever she has to face in her future with her family and others around her.. I think she'll be less freaked out by it all due to stuff like this which is great.

Reminds me of a story from when I was on D that I personally found hilarious. This young lady was coming in for her first treatment. 21 or 22. A dear young lady with real balls. She has a lot going on with her (she's still a facebook friend) but she's not the sort to shrink away and hide, but more "bring it!" and she came in, kind of right. hook me up! Her family was with her... including an older sister and sister's tough boyfriend.

This  young lady gets the needle in her fistula and is right into it. excited for it and not scared or upset...

boyfriend is sheet white... disappears to the "little boys room" and never returns...

he couldn't handle it. lol

I suspect ms 3 will be super cool from now on.

As for education - I do not push my condition or situation on people at all. If someone asks, I tell them matter of factly and explain as much as I feel is appropriate or that they seem interested in. I'd love to be able to educate everyone, but it's just not going to happen and many people will look, stare, and think whatever they want to think. Not much we can do about it really.

[Wildrose]

There are definate upsides to being overweight. In general if your overweight people don't look at you. I have a huge/long scar on my upper arm where my fistula is, and another on my lower arm. People never say anything to me, ever. But I hear stories all the time of people staring and making comments at other people. You can't tell me my scars aren't visible, they are. People just ignore them. Fine with me.

[talker]

Well now may I suggest a  for the wonderful  stream of comments here.

Honestly believe that any stares are purely just a reaction to an unusual observation.

Not experienced as some posting here, but maybe at.........    Ha.

Well, actually do try to remain 'normal' , upon seeing some nose pins, cheek pins, and tongue pins.

talker

[cdwbrooklyn]

I use to feel the same when I had my bumps on my arm.  It made me feel very uncomfortable showing my arm.  People use to always look and I wanted to curse them out.  To made a long story short, I got an infection in the bottom bump and was hostipalized for four days.  While I was in the hostipal, a vein surgeron stopped in my room and looked at my arm.  He immedately said he will remove the bump that was infected.  I practicely beg him to remove the other one as well.  He agreed.  He removed the bump that was infected on February 26, 2014 and the second one on March 12, 2014.  I could not wait until I was able to wear short sleeve shirts.  Now I show my arms every chance I get and people don’t stare anymore.  It made me feel so good inside, this surgeon changed my life.  I am so blessed and praise God he was put in my life.  Nevertheless, I’ve bought so many clothes with no sleeves and short sleeves.  It like a little girl with a new toy.  I now feel so much better.  It’s prefect to me and it’s the best it’s going to get.  I use my button holes which was not infected but per my surgeron, I can still use my fistula should I chose to.   See picture below. 
 

[goofball]

Is it possible to wear some kind of flexible, stretchy arm covering to hide it?