Problems With IC Being Invisible Disability

[songbird7]

I had a rough experience tonight. Our apartment complex has been taken over by low income housing. There are meetings sometimes at night which are hard enough for me to get to because night is the worst time for me. I usually don't go but this time I had some imput and needed to be there.The administrator told me when I said how much pain I am in until I can use the restroom, that I couldn't use her apartment restroom which is very close to where we met, in the same building. She refused me to use the apartment bathroom because she said something about insurance not covering it and it's her private apartment. I showed her my medic alert bracelet and everything. It turned out we had to walk outside and use the bathroom in a tool shed. It was locked. I had to make my way back to the office where the meeting was held and ask the maintence man to unlock it. It became painful to walk. When I had to go again I had to do the same thing. It hurt to walk so much and the toolshed was locked for security reasons. The maintence guy unlocked it. It got so painful I lay down on the floor which didn't help much. I was in pain for quite awhile due to this experience until I broke down in tears when I got home. My question is, doesn't there have to be reasonable accommodations made? Aggrevating the IC to high levels of pain was horrible.
All imput welcome.
Songbird

[kelly McC]

I dont know the laws but what happend to you sounds awhful ???? I hope they can make an effort to accomadate you ! Good luck,
Kelly:grouphug:

[songbird7]

I called a resource dealing with Americans with Disabilites, which IC is classified now as being under Soc. Sec. They said even though the meeting, which I feel I have the right to have access to took place in a management office, the apartment is considered private and exempt from considerations. Thanks Kelly for your good wishes. Does anyone know how to get information besides some voice mail which probably will never answer, for a Disabilities Advocate for things besides applying for Soc Sec Disability. There are lots of resources for people with visable disabilities, wheelchair access and such but for invisible disabilities like IC, it seems rough.
Thanks for listening. All imput appreciated.
Songbird

[lotsofgirls]

So sorry to hear about you being treated so badly :mad: , that was very mean of the manager.

Hope you are ok now,
Cath

[tigger_gal]

songbird sending you hugs hugs hugs. I am so sorry you had to go thru that .... next meeting explain to her unles there is better accomadations you will not attend..
hugs
brat

[froglady]

The only think I do know is that your local social security office usually has a disability specialist stop in about twice a week for scheduled appointments maybe dropping by your local office may help?? Good Luck! I'm so sorry that you had to suffer because of ignorant people.

[Iris]

Hi Songbird, I am sorry that you had to go through so much, just to use a bathroom, it must have been a horrible experience for you. Hope that you are feeling better and in less pain now, soft hugs Iris.:hi: :grouphug:

[songbird7]

I feel so much gratitude for you people here. This is such a caring place. I am really moved by it. Thank you for your love and compassion. I don't intend to go to another meeting probably no matter where it is because in the pm is the worst time for IC. Yes I agree. I thought it was mean too, or another way to say it is a total lack of empathy. Especially after what I told her about IC and the pain and whole scenario. I even showed her the med alert bracelet I wear. Oh well.........the adminisrator always talks about building a sense of community and then that happened? What's wrong with this picture?
I talked to various disability advocates who said people's apartments were exempt from ADA laws, but this metting was in the office very near a restroom. Go figure?
All the best,
Songbird:hi:

[yorkyloverx3]

HOW RUDE
People are so incosiderate sometimes. For all those folks ... I just which they could experience IC for 1 day, just 24 hours and bet they would change their tune:D (sorry I know that is mean) but until you have been there you don't have a clue
:confused:
I was just wondering what does your med alert bracelet say?
love Denise

[Alexa]

Oh songbird, I am so sorry you had to go through that!!! :( And at the same time, it makes me ANGRY that you went through it!!!! :mad: It is absoutely NOT fair and incredibly inconsiderate of that woman not to accommodate you.

You are right about the issue of this being an invisible disability...it makes it more difficult for people to realize we're in pain when they can't SEE it, BUTTTTTTTT that's not an excuse. I had a professor in college not believe that I was in pain and he refused to let me drop the course without a consequence and I ended up failing that course. It just makes me so mad.

I'm sooooo sorry you had to go through this. My heart goes out to you :grouphug: :grouphug:

Love,
Alexa

[ICchell]

Dear Songbid,
I am so sorry that you had to suffer like that at the meeting all because of some rude ignorant jerk!
Especially after you showed them the medic bracelet!
Duh! Hello! You obviously have that for a medical reason!!!!!!

:mad: :mad: :mad: I hope you are better now.
Hugs,Michelle
BTW,I love your site and my 2 yo daughter loves Teletubbies.

[Katrina]

Oh Songbird that sounds awful. Tears come to my eyes just thinking about it. I am so sorry. :grouphug: :grouphug: :grouphug:

[IWin]

Songbird,

I am really sorry about what happened to you. I posted my feelings about this whole bathroom access thing this morning under another heading....I think it was something about a restroom access card.

I just don't get how people can be so inconsiderate, medical condition or not. I find it just about reduces me to tears to even ask sometimes, because of the fear of being denied access. I don't think I should have to explain myself. If I have a need which is so bad I need to ask to use someone's restroom, why oh why do they have to say no. It doesn't hurt them one bit.

Again, it just pains me to know you had to be treated so badly.

[songbird7]

Denise, my medic alert bracelet says "Intercystitial Cystitis, needs frequent restroom access", and there's an emergency number to call.
Alexa, I get upset too about that college professor you described. Thank you for your compassion abnd caring, Katrina, IWin.
Michelle, I have all the telletubbies and they talk and sing and are a nice size:) I'm glad you like my site.
Everyone thank you for understanding and helping me feel I am not alone.
Uncaring people having IC for a day? I doubt they could stand the first 5 minutes!
Warmly,
Songbird

[Dixiefireball]

i'm so sorry you had to go threw that that is so unfair. I wish i could find a way to let more people know about ic and make them understand it.
I how ever have got the local hosp to look into getting more doctor in the er to understand ic.
i had a major fit about it but they did listen!! It may help that i use to work at that hosp too, but it was a new manger and the hosp has all new people there a long story. but at least i did get someone to listen.
its hard for people to understand ic because they can't see it and we have to live to fight the battle it is so unfair. but i'm very proud of you for trying. that is the only way we are going to get anywhere is trying.
sending you hugs and prayers
Rhonda

[Mimi-in-Chicagoland]

So if its a public office...where does the public go??? Michigan is working on a law where you have little cards that you carry. If you show these cards to businesses that don't have public restrooms, they have to let you use their private restrooms. I wouldn't go to the meetings if I couldn't go to the restroom.

[Christa]

I need that bracelet!

[yorkyloverx3]

ME TOO
Can you tell us where you got it?
Denise

[songbird7]

I'm sorry I haven't seen this part of the thread until now. Just go to www.medicalert.org and you can join on line and get the bracelet and a nice record of your medications.
Love,
Songbird:hi: