Finding out how they REALLY feel......

[mrhecht]

This is about finding out how your good friend REALLY feels......
My 22yr old daughter and her very new (3 months) boyfriend just found out he has diabetes. So I'm telling one of my good friends (who also happens to be my sister-in-law & a former kidney transplant co-coordinator) about the diabetes situation and she starts saying how "you know, we really have to pray that this 'involvement' gets resolved and that Ashley's not too invested in this guy, because of the effects of the diabetes; you know, the muscle wasting and then the kidney problems, blah, blah, blah". Like all that stuff's a given, anyway....not!

Now, I have always prayed over my daughter's relationships; that if this was not the right guy for her, that God would just move in and the relationship would dissolve. And Ash has always been very picky and not had a lot of "boyfriends". And so my friend is telling me all this BS, like NOW I should pray differently, like I should be praying that the relationship ends because this guy has an illness. SO I take a breath, 'cause all the old feelings are just boiling to the surface, and I say, quietly, "Ya know, the guy's not a defective." And then the backpedaling started, too long & boring to detail.

So I'm guessing that this "secret, hidden" attitude explains why my family/friends have never bothered to try and introduce ME to any of their single friends. I've got a large family.....4 siblings....I've been living back here for 10 years...not ONE introduction...not ONE group dinner or event where I might actually meet a single. I've always kind of suspected that this is how they really feel and her reaction to Ashley's guy friend having diabetes just confirmed it.  "You know, she has this health issue. You know, she has these needle marks and that ugly tube in her arm. You know she has to spend all that time on a machine. You know, her kidneys don't work. You know, she's very, very sick."

To actually hear it coming out of the mouth of someone I am very close to made me feel sick......I wanted to throw-up...I feel like a big loser.......the short straw that no one wants to draw.....the person that people cross the street to avoid........the moldy cheese that gets thrown out....ok now I'm exaggerating 'cause I'm pissed!

People just generally suck.

[Zach]

I kinda like moldy cheese.
 

[angieskidney]

Now, I have always prayed over my daughter's relationships; that if this was not the right guy for her, that God would just move in and the relationship would dissolve. And Ash has always been very picky and not had a lot of "boyfriends". And so my friend is telling me all this BS, like NOW I should pray differently, like I should be praying that the relationship ends because this guy has an illness. SO I take a breath, 'cause all the old feelings are just boiling to the surface, and I say, quietly, "Ya know, the guy's not a defective." And then the backpedaling started, too long & boring to detail.

So I'm guessing that this "secret, hidden" attitude explains why my family/friends have never bothered to try and introduce ME to any of their single friends. I've got a large family.....4 siblings....I've been living back here for 10 years...not ONE introduction...not ONE group dinner or event where I might actually meet a single. I've always kind of suspected that this is how they really feel and her reaction to Ashley's guy friend having diabetes just confirmed it.  "You know, she has this health issue. You know, she has these needle marks and that ugly tube in her arm. You know she has to spend all that time on a machine. You know, her kidneys don't work. You know, she's very, very sick."

Wow I never thought about that but that makes sense that you took it that way. I mean, geeze I can't believe that former kidney transplant co-coordinator said that! With presumptions and steriotypes like that .. man where is the understanding and acceptance? I am just glad that my fiance is taking such a chance on me and looking past the AV fistula and the machine to still want to marry me!!

Well ... now that has gotten me thinking .. that would explain the difference in people's attitudes in my life as well. Gives you something to think about.

BUT that is one thing I have noticed about kidney transplant co-coordinators .... they tend to see life as we should live it in a bubble  .. so that might just be how that person sees things and not how everyone sees it.

[jbeany]

 

We are not an illness - we are not defined by what we do for our health!

Don't let them get you down!

[Sluff]

Have you tried Renal Romance yet?  www.renalromance.com It's new but You are welcome to join.

Everyone  has a right to a soulmate, lover, husband, wife or significant other. Just because your on dialysis, does not make you a loser or anything even close to a loser.

[stauffenberg]

Having had type 1 diabetes for almost 41 years by now, I can tell you that I have faced some form of prejudice from every person who ever knew about that medical condition, so it has always been my rule, as far as possible, simply to keep that a secret, if only to save people from the evil things they would say and do if they knew about it.  Even with some girlfriends, if they were the type who would not be able to accept that fact about me, I have kept that disease a secret, which was surprisingly easy to do, even when living with them, with a little bit of 'double-agent' skill at hiding things and explaining things away.

The worst problem has always come not from the girlfriends who knew about my disease, but from their parents.  Some of them told me outright never to mention it to their parents.  In other cases, once the parents did know, they did everything they could to stop the relationship, and of course, the 'I' word was often mentioned, because, as almost the whole world seems to know nowadays, 60% of males who have had diabetes for more than 20 years are sexually impotent.

Interestingly, my wife of 26 years has never mentioned the fact of my diabetes to her relatives, even though they knew I was on dialysis for several years!

[goofynina]

Some people can be so freaken stupid  and you can bet your sweet patootie all of them are usually healthy, lol     Don't let them get to you MrHecht.

Hey Stauffenberg??  You havent posted a pic in our Family Album, come on, post a pic, pleeeeease 

[melshell]

Being insulin dependent with blood sugar checks four times a day-before every meal, and at bedtime, (or before dialysis rather), I've had the opportunity to expose quite a few people to what it's actually like to be a diabetic. I'm always amazed at the reactions I get from family and friends who see me checking my blood sugar, or taking a shot for the first time. Most are curious and ask questions like; what causes diabetes?, what does insulin do?, why do you have to take it?, and almost all of them always say: I don't think I could do it!! Alot of them are scared of needles, or of pricking their fingers. I've never tried to hide it from anyone. I seize the opportunity to educate. I think it's human nature to fear the uknown. I would hope that that was the case rather than thinking human nature is to shun those that are different, or to perceive any type of treatment for an illness as an indicator that someone is "broken" or defective. Most healthy people that have never encountered a chronic illness, whether it be themselves, or someone in their family, are completely clue-less.  What has become common practice for us, say, checking our blood sugars regularly, giving ourselves shots of insulin or epogen, or getting hooked up to a machine on a regular basis may never have even crossed their minds. Ignorance should be the most dreaded disease, it's by far the most wide spread, THANKFULLY, there is a cure!!!!

[angieskidney]

Do you think that people might be able to accept dialysis more easily than diabetes for some reason? It sounds like a lot of people don't accept diabetes yet when I was on PD and had to inject Eprex in my stomach people all accepted it like it was no big deal. Of course my mom said she could never do it (the subcutanious injections).

I'd have to ask my cousin about how people react to him about diabetes.

[MJB]

I have to say it really bites that people define you by your health. I have unfortunately experienced this first hand. I was engaged to my best friend. She and I met in college when I was so called healthy. As time went on I became ill and all she wanted to do was to be by my side. So she thought!! We dated for 5 years, She moved a lot. I was floored after our engagement I found out that her mother, a devout Christian, was so unhappy about the comming nuptials. It was hell from that point on. From not being the right religion to not making enough money to support her daughter and finally the truth...He's sick. I finally gave up because I could see the looming doubt in her eyes. I guess you could say God looked over me on this one.  We remained very good friends for two years after this and then she just quit calling without a word in almost 2 years now. I feel it's best left alone. I hope she is happy. I am very happy to be single. I do miss companionship. I do not want to have to be judged by my health ever again. I am starting to feel the effects my health are having on my long term friendships. I feel they can't and really don't want to hear the issues that I face. It's just lip service.

It is amazing who will let you down.

[angieskidney]

I feel they can't and really don't want to hear the issues that I face. It's just lip service.

It is amazing who will let you down.

I have experienced this in my job. They judged me unfairly and then I thought I was being smart by explaining but it turns out they didn't want to hear it and felt I was pushing my health on them. They rathered I didn't work with them but just sat home on disability. They actually told me this. I tried so hard to prove myself in the workplace that I really pushed myself, even when I first had the PD catheter put in and wasn't supposed to do any heavy lifting. I ended up getting umbilical hernia because they told me there is NO light duty at my job. I really resented the fact that they judged me as if I was lazy. I really had wished they knew me before I was sick and was at my old job. I worked so hard for 9 years and climbed successfully up the ladder and even got a long awaited promotion. But because I had to go on dialysis I couldn't accept it and had to change jobs. It felt like I was at the worst job in the world going from that to this store where they treated me so badly.

When it comes to relationships however, I guess I have been lucky. The only instance was when I first went back on dialysis. The guy I was living with started hanging out with his bestfriend's girlfriend instead of me because I was too weak (my hemoglobin was 66 .. or for you Americans .. it was 6). He started liking muscular girls and hanging out at the strip club all the time when he wasn't working (he was a trucker) and never wanted to talk about anything. Needless to say that ended.

It felt terrible to be judged for something you have no control over.

[Sluff]

It's a fact of chronic disease. To be singled out like that. The whole thing is you need to feel good about yourself.

[Joe Paul]

It don't matter to me what others think. If someone cant accept me for what or who I am, its their loss 

[paris]

I agree with Joe Paul. People do try to treat me different at times, but I don't let them. I am me - take me or leave me - I will still be ok with who I am.  Kidney failure doesn't define me; it is a small part of me and hopefully my charm, sparking personality, wit, intelligence, beauty will define me.      Anyone believe any of that?

[kitkatz]

I have fought for some kind of acceptance my entire life.  Accept me for who I am not what illness or genetics have made me.  Sometimes I get so tired of the fight.  Why can't the human race just learn to love each other? If I prove to be unworthy of you, then move on.  However hurtful words do not have to be exchanged.  Just move on.  Let each other live and let live.

[Chicken Little]

I don't hide it in my personal life, but I don't openly discuss it either.  In my professional life the only people I allowed to know I was diabetic were my assistants and they were sworn to secrecy.   I had one job years ago where everyone knew and it was awful.  People walked around me on egg shells and looked at me with pity in their eyes.  When I recently became too ill to work, people were stunned to learn of my issues and one boss actually said to me that he was shocked someone "like me" was able to do the job at all.  He thought it was a compliment. 

[boxman55]

I have never told anyone at work that I am a diabetic and I don't plan on ever doing so. Most know I have ESRD and I haven't been treated any differant. I guess I am lucky to have a great group of people that I work with and for. I don't  think that would change if they knew I was diabetic but why screw something up. Boxman55

[Rerun]

I have never told anyone at work that I am a diabetic and I don't plan on ever doing so. Most know I have ESRD and I haven't been treated any differant. I guess I am lucky to have a great group of people that I work with and for. I don't  think that would change if they knew I was diabetic but why screw something up. Boxman55

I would think that if they saw you wondering the halls with a glazed look on your face or you are asleep at your desk they might give you some juice or candy if they knew.   

[mrhecht]

Sometimes it feels like I've had more acceptance from the people I've worked with over the years, especially when you uncover the nasty little secret of someone close to you.

[glitter]

This thread makes me cringe everytime I read it, I am sorry you get mistreated.

[Hope]

I know this is an old thread, but I'm glad I found it because this is a touchy subject for me. I can't believe some of the comments I read on this thread, especially about the over-involvment of parents in their (adult) child's relationship. When I found out my (now ex) boyfriend was in the hospital with ESRD, I was like, ok, WE'LL get through this. Just another bump in the road. I didn't have thought's like, oh man, I'm too young to be taking care of a sick man, or, how is this going to affect me and my life.The odd thing is his parents would not let me see him or talk to him! A week later when he finally called he talked to me like I was a stranger and said he didn't want to be in a relationship anymore. I was definitely confused and weirded out. 

So I talked to all my friends and family who were shocked at how he and his family handled the situation, but almost everybody told me to forget about him and move on. I was shocked and disgusted when a few people actually said to me, "well, do you really want to spend your young adult life taking care of a sick person who is going to have health-related issues for the rest of his life?" WTF?? Uhhhhh, yeah, cuz I LOVE HIM!

In my opinion true love is unconditional. If your significant other leaves you after you get sick, it probably wasn't true love. AND, if it's true love, there is absolutely nothing friends or family can say that will affect how you feel about that person. 

There is nothing more unattractive than a man who cannot make a decision without consulting with mommy and daddy first or gives in to what his parents want for him. Yuk! 

[pelagia]

Any chance he thought he was being noble?

[Chris]

With all my health crap, this is why I don't date. I know people think this way. Seems there is a big red stamp that says Damaged Goods on the forehead.

The odd part is that it came from someone who was a transplant coordinator, which then makes me think why she is an ex coordinator. I'm sure there is a real reason why she doesn't do it anymore, but after reading the way she reacted just make me think of that.

[Hope]

Any chance he thought he was being noble?

Yes, the thought crossed my mind. But I don't see him and his illness as a burden or a death sentence. There was no discussion, I wasn't given a choice. -sigh- Whatever