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Life With Lupus

Communication is Hard


#21

UM let me give you one more academics perspective. To hold a spot in a class preventing another student from taking the class what ever the reason is very incosiderate. It could easily cost that student another semester or even a year in school if it was a seqential class. That could cost someone their entire education. If it happens to one if your departments advisees, who happens to be liked, you will have trouble the rest of your career. Most registration happens the semester previous not days before class starts. its your responsibility to know what you are getting into.

"Accomidations" are not situational.and need to be taken care of well before class starts. While certain disabilities lead to particular accomidations, academic integrity will never be comprimised. All your work has to be done, done to standard, attendence matters, practcum hours matter. If you can't do it then "try something else" is appropriate.

Understand though, I was preparing students for a field where, you would not want accomidations made and the proffs ruthless.


Living with a chronic illness is tough, but the fact is most people have something going on in their life. And while they may give you sympathy or understanding, it is short lived.But what you get from any relationship, professional or otherwise is proportional to what you give. When you say nobody cares or understands you correct. The best thing you can do is make sure you understand.


#22

LET ME CLARIFY ONE FINAL TIME REGARDING THE EDUCATIONAL PORTION PART OF THE POST…

  1. I was registered with DSS, had all paperwork, contacted my teacher a week before class semester started which for the accommodations i needed and the class i was taking were more than enough time, she responded I should find another class not because the accommodations for attendene and extensions on assignments IF NEEDED are not reasonable but because SHE CHOSE NOT TO ACCOMADATE ME.
    2.This course is a requirement for every student and every major as a UNIVERSITY REQUIREMENT. IT IS NOT A SEQUENTIAL CLASS, AND IF IT AFFECTED ANY STUDENT AT ALL IT WAS THE SENIORS WHO DO NEED THIS COURSE TO GRADUATE AND FAILED TO REGISTER IN TIME FOR. THOSE STUDENTS PLUS THE LOWER CLASSMEN WHO WANTED TO TAKE IT BECAUSE THEIR FRIEND IS IN THE CLASS…THESE ARE THE PEOPLE WHO WOULD HAVE BEEN ON THE WAITLIST WHO I WOULD HAVE BEEN ACTING “DISRESPECTFUL” TOWARD.
    3.I never told her I was dropping she was trying to bully me out if the class so MY SEAT IN THAT CLASS AFTER SPENDING 10 YEARS TRYING TO EARN IT…WAS MINE!
  2. If you mean accommodations are situational and that they do not apply to every class then I’m not sure exactly what you mean…obviously if I was taking a long distance running class or something there are no accommodations that are reasonable for that. But that is
    why you get a doctors letter and paper work and take it to DSS AND THEY APPROVE WHAT IS REASONABLE FOR EACH CLASS.
  3. YES chronic illness is tough, and yes many have something going on in life…I have many, many, many “things” in my life. So again I’m not sure what you mean that others don’t care or understand and that relationships are based on proportional giving so by that do you mean I’m not giving back because I want others to understand that I have lupus??

#23

MT411

There are many instructors out there that don't feel that they should have to accommodate people with a disability. There are also a lot of bosses out there that feel the same way. We can yell and complain as much as we want but that isn't going to change them. We need to learn to take the accommodations that they are forced by law to provide and prove to them that we can do it. There is also the fact that sometimes what is intended to meet the requirements and so written and what do in truth meet the needs are far apart. An example of that is the handicap accessible restrooms. There are certain measurements given of the stall size so that a wheelchair can get into and manoeuvre in them. I have found that very few actually are usable with a wheelchair if you need to transfer from the chair to the commode directly without being able to stand and take a couple steps. Or some of the restrooms may be usable but to get into them is impossible because of where the trash bins are. The businesses are meeting the letter of the law but not the intent just like your instructor is willing to meet the letter of the law but may make it as hard as she can for you to pass her class. Unfortunately this is the way life is no matter how unjust we feel it is, we have to deal with it. Thank you for clarifying what all your problem is. It is going to be a very challenging class for you but I'm rooting for you. Go Get them and show them you can do it.


#24

Doggie hit part of it. Builders don't understand, so they follow the law. But understanding is moving target. My wife and I have been together since 7 th grade. I have changed careers several time over those years. She does not understsnd yet my diseases. I don't expect her too. And trust me on this, there is a lot about her I don't understand. That doesn't mean we are not a powerful partnership.

I don't know what you studying. I train (or did) physicians. What is the line between compromise and accomodation?

The most important thing to understand is that YOU have lupus, lupus does not have you. That makes things harder but not impossible. Everyone has something that can prevent them from achieving their potential. As very few people ever do achieve what they can, its as big an obstacle as your illness. They just ss you are in charge of their destiny.


#25

Mt, I hope you get a chance to meet with the prof face to face. Could be she has had students take advantage before and was judging you incorrectly, based on her past experiences. If you get a chance to talk with her, remaining as calm and matter of fact as possible about your circumstances should serve you well. Emphasizing your desire to do your utmost in the class may help, too, as teachers generally warm to students who are engaged. Best of luck with your class, and your education. Good for you for persevering. :slight_smile:


#26

I've read many times that people don't understand this disease because you don't look sick they think you are not sick.Even the people closest to me say the same things." I don't understand , you don't look sick".I'm tired of trying to explain.


#27

Thank you for your support, and this is very true. I actually took this class last semester so I did receive an A but as I predicted my professor made it difficult every step of the way.

Doggie said:

MT411

There are many instructors out there that don't feel that they should have to accommodate people with a disability. There are also a lot of bosses out there that feel the same way. We can yell and complain as much as we want but that isn't going to change them. We need to learn to take the accommodations that they are forced by law to provide and prove to them that we can do it. There is also the fact that sometimes what is intended to meet the requirements and so written and what do in truth meet the needs are far apart. An example of that is the handicap accessible restrooms. There are certain measurements given of the stall size so that a wheelchair can get into and manoeuvre in them. I have found that very few actually are usable with a wheelchair if you need to transfer from the chair to the commode directly without being able to stand and take a couple steps. Or some of the restrooms may be usable but to get into them is impossible because of where the trash bins are. The businesses are meeting the letter of the law but not the intent just like your instructor is willing to meet the letter of the law but may make it as hard as she can for you to pass her class. Unfortunately this is the way life is no matter how unjust we feel it is, we have to deal with it. Thank you for clarifying what all your problem is. It is going to be a very challenging class for you but I'm rooting for you. Go Get them and show them you can do it.


#28

yes I went through this in school also I was double majoring in nursing and administration of justice I have 3 classes left in AJ and 3 before I can go into the nursing program. I had to focus on me cause it was stressful and I could not think I guess I had that fog thing going on. I stopped everything including church and my numbers for lupus started going down. Today I try and pace myself and school is on hold right know I pray that you look at the big picture your health is every thing so please take care of you. Many people won't understand cause you don't look sick but I know what your going through my friends and family say I look so good I tell them I clean up good but most of them don't see the pain or when I can't eat or when my legs give out and thats ok Im just waiting on my healing. don't give up be blessed godsgirl66


#29

School is incredibly stressful especially today and we’re all trying to accomplish so much but it takes a big toll on our health. I only have 3 classes left thankfully but school has always been a challenge for me and many times I felt like I wasn’t going to make it. School is a different experience for everyone and similar to you I had to put many things on hold including relationships. If a person in my life did not support me or understand that their needs came 2nd to my education than that was a person I didn’t need in my life. Don’t get me wrong I would try to be there for friends or boyfriends when they needed me but going to social gatherings was always bottom on the list if it was there at all. Sometimes my actions may have seemed selfish to others who were not going to school or graduated but really I was making the ultimate sacrifice. Since I’m 27 and still in school trying to earn a bachelors degree I’ve sacrificed a big portion of my youth. Other friends have moved on with their lives, they’re married they have kids, and they’re buying homes or apartments. I’m still living at home with my mom. I’m not working because I can’t with lupus and school. It’s really hard to watch others move on with the next chapter of their life and it takes me forever just to turn the page. However, this is the reality with this illness. You have to pace yourself, you have to listen to your body, and have faith that you will get there eventually. Be strong and carry on and I wish you the best of luck with school. What keeps me going is picturing myself at graduation walking across that stage and knowing how hard that journey was for me but knowing that I did it and that it has made me so much stronger.


#30

There you go................. I knew you understood.


#31

Thanks for all the support :) I may not always have all the support I want, friends and family have faded along the way, life is a difficult journey especially with health problems, and so I know some are not up to the challenge to go on that journey with me and while it may hurt sometimes I realize those that have stayed are worth twice as much even if they don't always understand everything I'm going through.

Those that have lent their ear or teachers that have empathized in addition to accommodating my needs probably will never know how much that meant to me. One professor in particular was very caring and empathetic. He helped me out a lot and at the end of the semester I sent an email telling him how much I appreciated everything, he replied, "I didn't do anything at all. You did all yourself."

Lupus symptoms really started to interfere when I was about 22. I knew something was wrong and I tried to keep up the "I'm a functional, normal, adult" routine but eventually Lupus did "have me." I think autoimmune disorders simmer beneath the surface for a long time before things start to bubble over so I know it's going to take a long time to "recover." Will I ever be normal or the way I was before I ever heard the word Lupus? No, but there are also many small victories that give me control of my life again and slowly shape a strong, determined, wiser person who just happens to have Lupus.


#32

Sometimes the most important part of your body when dealing with this stuff is your middle finger always keep it well exercised and at the ready (figuratively of course................) Life has all of us on occasion. If it was easy everybody would be successful. Sometime success is in really little pieces that we don't even notice. I remember once after starting a new medication after a month or two wondering why I was bothering. One morning my wife was so excited I though we had won the lottery. (a goal of mine) Sadly we hadn't. What I had done without thinking about it was I had tied my own shoes. It had been many years since I was able.

BTW I'm the mean one. Don't let it fool you, don't hesitate to ask about anything............. And keep up the routine, it becomes habit and people respond better when you do. Just like that great professor. The rest? That's what the middle finger is for.


#33

Oh yes I have that same problem with people. I get really tired Round 1. My boyfriend say stuff like how are you tired? Didn’t you get enough sleep? Or what did you do that made you that tied? Some people at work understand and look out for me, like they just look at me and say don’t push your self or I’ll have to tell manager to send you home. Or they make sure I have water. People that don’t know say man your always sick or you never feel good. I wish I could just scream and tell every one but that wouldn’t help. It hard for people to understand what we go through on a daily basis. It’s very lonely not being able to talk to someone and they understand. This website is my only outlet.


#34

"Spoon" is code for energy? Because you need energy to do any activity.


Talencia said:

Spoon Theory! For any and all who haven't seen it, read it, or heard of it!


#35

"Even with my boyfriend who I have been with for 4 years, he still says things that make my blood boil."

Lupus is a blood disorder. And what i've learnt quite recently is that disease is a physical manifestation of our thoughts and words. I used to talk like you. My blood boils.. Once i became aware of my words, life got better.. Although it didn't make the Lupus go away lol..

By the way why does it seem like you do all the house work? Doesn't he live with you? My husband and I share chores. We understand that we both work during the week and are tired the same way, so we share the housework so we can finish quickly and relax. Why do you say communication is hard? I'm sure you guys can find a common ground.. You both know each other better than anyone else here.