Friends that don't quite "get" it . . .

[joy]

I can work, but I can't work full time, that is a definate...my docs have told me 20 hours a week max. It is sort of depressing, though because my husband doesn't seem to understand that I am in pain, and I don't have the energy to work full time. He just wants the additional income. I am going to see about hiring a lawyer, and getting on the program, if only for a little help financially. Kev has been really on me to get back to work, but everytime I think I am ready, something else comes up. I have been applying for different jobs(especially with the exchange commisary and MWR) where I can work part time. I just need a break to get away from the kids and out of the house. The money would be nice too! WEll, take it easy!

 

[Georgia]

Well, I guess all of us just enjoy our forced leisure

Well, I guess all of us just enjoy our forced leisure

Melissa, my mother told me that she was so glad that I wasn't "pushing" it after I got back to work. I told her that "pushing" it wasn't even in the cards; I did what I did and then couldn't do any more. This was a concept she can't even begin to understand. She thinks that you can always work harder, or whatever.

We understand that these are the conditions that don't allow us to extend outselves further that we can go. And if my mom (who's my biggest fan) doesn't understand that, certainly there aren't very many friends who can!

 

[MelissaM]

After reading all of your posts and reflecting a bit, I agree that friends probably aren't going to get it. I am willing to take part of the responsibility, though. . .I guess if I put on a front of everything "being fine" (oh, how I wish it was!!) and keep accepting invitations with the hope that I will be having a "good day" (those happen now and again!), my friends can't help but think things are better than they are, huh?

You all help give me permission to admit I am feeling as bad as I feel and stop that river in Egypt (I think it is called De Nile? =) from flowing so hard. . .

Thanks.

Melissa

 

[Ross]

I'm a friend and I just don't get it. Just had to do it.

 

[pillarpaul]

Welcome, Melissa, from someone right down the Boulder Turnpike from you.

Before my surgery in April, I thought I was asymptomatic. I fought myself to do things that I just became way too tired to do. "Getting old" I thought. "Stress of the job" I added.

Since you live in Boulder, I am guessing that you are very phsyically active. If you told your friends you have cancer I bet they'd "get it". Maybe you should tell them you have a serious illness. I did that before my surgery. I "gave up" doing the false front and told people I indeed had a serious illness. That seemed to help them "get it". People seem to shrink when you use the words illness and serious in the same sentence. The good news is that I more than regained my energy after the surgery (not RIGHT away, mind you) and can once again participaite in more activities. Good luck and check back often.

Paul

 

[Lisa in Katy]

I guess that I don't get it. I was kind of proud when a friend told me that I was the healthiest looking sick person they'd ever seen. I knew my limits for the 22 years prior to my surgery, and the 5 years since my surgery, and I never felt like I had to prove anything to anyone else. If I didn't feel like doing something, I just said No. I didn't make excuses and I didn't explain.

I certainly don't pretend to understand everything that other people are going through.

 

[Lisa in Katy]

Sorry, I hit post sooner than I wanted to.

Since I've never been through a divorce, and hopefully never will, I don't understand all the emotional things that go with it. I don't understand people with Anorexia. I don't understand people who self-mutilate. I don't understand people with mental illnesses. Furthermore, I don't try to understand these things. I just know that these are very real issues and deserving of a great deal of compassion, if not understanding. I would hope that a TRUE friend would be the same toward my "illness".

 

[ILoVeNY25]

Hello Melissa and welcome to one of the only places where people actually "get it". I often find myself getting frustrated with friends and even family who don't understand. I think sometimes that my age works against me in that. I'm 20 years old and you can imagine that my peers just don't get it. My friends work, go to school full-time and hang out till 1-2am on WEEKDAYS!! I feel like I'm 20 going on 80. I very rarely hang out with my friends and when I do, it's just like you said "when I'm having a good day" or after I've taken a nap. It's hard explaining to people what it's like; The exhaustion and the "icky days". I sometimes feel guilty because I feel like my friends think I'm a baby or I'm lazy because they do so much more than me. My best friend is the only person I think who actually tries to understand and God willing she never will fully understand. There's so much more than just the surgery and recovery. It's emotional stress on top of everything and you need excellent moral support. I ended up not telling a lot of my acquaintances about my surgery, Because I knew that it would aggrivate me more when they didn't understand and some of them got mad that I didn't tell them but I think it made it easier on me. When you try to explain to people about the endless doctors appts. and all the pill popping and the bruises on your arms from the needles and everything else, it's just hopeless.
I've tried my explaining and I gave up a while ago. The pain of surgery alone, very few people understand. I think if you've gone through it then you know, and if you didn't; You have absolutely no idea.
Many of us can sympathize with the "You look great" speech. I get that all the time, Like I didn't have OHS. Cause if I did I'm supposed to be in a wheelchair or something. I sometimes think it's society or ignorance or being nieve. Or maybe it's just that people don't want to understand. Whatever it may be it doesn't make it any easier on people like us, But you know you always have us to come to and for the most part, WE GET IT! Take care of you and come and vent anytime. Sorry for the long post everyone, I feel that this topic hits too close to home.

 

[scottvant]

People (employers) who don't get it

People (employers) who don't get it

My immediate coworkers knew there was something wrong with me since they saw me every day and could tell I was getting sicker. My boss is actually located off-site and had no idea. First she heard of my hospitalization was when I called her, *from* the hospital, asking her to initiate disability benefits paperwork. "How long did the doctor say you'd be out?" "14-16 weeks," I said. (Which was true.) "That sounds excessive. I'll talk to your caseworker and see how long you really get." No, "hope you get better," or even "gee that sucks," just "I don't believe you need to be out that long."

Found out that in California, you get 150 calendar days of full disability practically without asking, unless you *want* to go back earlier. Obviously, based on her attitude, I took 149 days. I did at one point call her, a month before that, saying I was feeling better and could come back earlier if that'd help her/them. Her response? "What, are you a doctor now? I don't want you back until a *medical* *doctor* says you can come back. And when you *do* come back, I don't want you coming in late, slacking off, taking afternoons like you were before you left.

::boggle::

No indication whatsoever that she even cared, much less understood, what I had just been going through, *or* how unbelieveably sick I was those last few weeks I was working, when, incidentally, I didn't take a single sick day.

People.

Scott

 

[Guest]

Yikes Scott....sorry about that experience with your employer....

I've had...and still have...the exact opposite experience of you with regard to employers. It was my immediate manager that ensured I wasn't full of stress at work the week or so before my surgery in January...and it was that same manager that made me switch to half-days after working 3 full days when I returned to work in late February/early March. And, it is that same manager who ensured that I went home early when I needed to....so much so that I began to feel a bit guilty, but as she pointed out, if I'm stressed at work, that is not going to help my recovery. And, yet, at some point, that all has to end...otherwise, why would they keep me as an employee?

As for friends not getting it....what has been said is all so true...unless you've been there, you don't know...don't have a freekin' clue. And yet...that goes for anything in life, really....any type of surgery, experience, etc....unless you've been there, you don't really know. Yes, you can empathize, sympathize, etc...but you can't ever know 100%....and that can be frustrating, especially when friends turn their backs on you when you feel you need them most.... But, sometimes, those small "abandonments" can be blessings in disguise....

Hmmm...not sure exactly where all I was going with that...LOL. If I think of more to say, I'll write more later.... .

Peace...always,
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[MelissaM]

Wow - you all are amazing. I am in good company here, with others taking thoughts right out of my head.

What a wide range of responses from employers. . . .from screwball to wonderful.

Being self-employed has been both a blessing and a curse during this time. Since I am work from home, taking naps during the day is easy - yay - but finding the energy to drum up new clients is just not there right now. I find myself at a bit of a financial crossroads since I was smart enough to get health insurance, but not quite smart enough to get disability before my endocarditis hit.

So. . .right now it is all in God's hands.

Nicole, you must live such a different lifestyle from your peers. Just think of all of the hangovers you are missing! I am just out of my twenties, and looking back, I say you are getting the best part - rest and naps!! But it still must be frustrating not to be able to do the things you want.

Today, to boost my spirits, I sent out an mass email with an update and asked for prayers and words of encouragement. I feel better already. . .

Hanging. . .

Melissa