Quantcast

Life With Lupus

Communication is Hard


#1

Usually when I’m at my worst no one sees what I am going through, so when I do feel well enough to go out or go to class I don’t “look sick.” But, that doesn’t mean I’m not tired or achy. I feel like it’s hard for others to understand what I am going through. I’ve pushed a lot of people away because I feel like they don’t understand. At first it was very depressing to feel like none of the people you thought mattered are there for you, and at times it still hurts. But, I’ve learned to let go of people that can’t understand because it just puts more of a toxic strain on my health and it’s not worth it!

However, I can’t avoid interacting with everyone. I try to communicate the best I am able but communication takes practice and effort on both ends which is frustrating. For instance since I’m in school I need accommodations so I registered with Disability Support Services. Each semester I have that dreaded talk with my teachers. Usually the teachers are very accommodating and understanding, but sometimes I run into “conflicts.”

When I told one teacher she responded, “the class was going to be too much for me, and I should try to find something else.” Obviously, I felt very defensive and frankly offended because she didn’t even discuss accommodations. The class was a requirement so I really didn’t have a choice but to take it. My alternative would have been to contact the college and request an exemption from the requirement—which is not as easy as it sounds. I talked to my advisor before registering for the course. I thought I jumped through all the hoops and communicated my needs so I wouldn’t have any “conflicts.”

I guess what really makes me angry is the way you’re treated like you’re not capable. I’m capable, but I also need a little help from time to time and mostly I just need a little empathy. Even more irritating was the fact that at the time I talked to my teacher I told her I was sick. I didn’t go into details but I had a kidney infection, the flu, and an allergic reaction to the antibiotics so I was REALLY sick. I didn’t respond to her email right away (2 days tops) and she told me that, “I was being disrespectful to the other students who were on a waiting list. She needed confirmation that I was dropping the class. The other student communicated immediately with his advisor and with her.” Basically I felt like she was reprimanding me. First of all I’m 27 years old. I’ve been going part-time to school for ten years. I’m not some teenager who needs to a lesson from her on how to be an adult or whatever. Second, should I have to apologize for the inconvience to her and the other student for being sick? That was the ultimate slap in the face.

I don’t know…it’s really frustrating. Even with my boyfriend who I have been with for 4 years, he still says things that make my blood boil. For instance when I have really bad pain and I tell him my legs hurt so bad, and he says, “From what?” I say, “From nothing. I don’t have to do anything to be in pain…that is just the illness.” Then I feel like he doesn’t understand me at all even though I talk about it all the time. I feel guilty too because he works outside in construction and I know he has had a long, hard, tiring day. But, once he’s rested for a bit or has the weekend off he can still wake up at 6 A.M. and jump out of bed to go fishing…I can’t do that! The laundry needs to be done, the dishes need to be washed, and the trash needs to be taken out. Since I’m home all day I try to do those things. I feel like it’s my responsibility but if I also felt better I wouldn’t be home all the time…I would be working. So, again there is this lack of understanding that I still need his help to do those things.

Sorry for the long post but this is a topic that is such a major issue. I was wondering if others have experienced similar communication problems and if they feel the same way or am I just being too sensitive?


#2

Does your school have a Disabled Student Services Department? The first thing you need to do is to talk to someone in that department to find out how to get the accommodation that you need from the school. You do not need to explain yourself to your professors, but you do need to communicate. Two days to return an email is not excessive, and the professor was being rude. Don't take it personally.

Next, give up on the idea that you can get the people in your life to completely understand what you are going through. They can't. The most you can hope for is a little sympathy. When someone says something stupid like "Get better soon", you just have to take it in the spirit it was said. You know (and we know) that you aren't going to get better - but what the person who said that really means is that they don't know what to say, but that they care about you.

Your boyfriend will never understand what you go through on a daily basis. That's not his fault, just like it's not your fault that you're sick. Give him some slack and give yourself some as well. You have nothing to feel guilty about - it's not like you did this to yourself!


#3

I have no idea if this is a healthy suggestion or not, but here goes... I myself tend to kind of personify Lupus. In my mind, Lupus is its own entity, a silent, oblivious, vicious force of nature. It doesn't really help a lot to think of it that way, as I still can't fight it face to face, but it gives me something to rage at.

I bring that up because it also can provide a means of communication. It can add a lighter, tongue-in-cheek note to things that otherwise are inexplicable. When your boyfriend asks what's making you hurt, you can blame Lupus, or call it The Wolf. Create your own code for talking about it, even when it's just the two of you. "The Wolf is chewing on my foot," for example. It gives Lupus a fierce face that is relatable, and helps give an illusion of a 'why' to the situation. There is no why, but if we see Lupus as a beast, something that attacks and causes pain, it can help to combat the frustration of not otherwise having an answer as to WHY a foot, a hand, our whole body hurts. Using Spoon Theory also can help when you have no way to explain feeling dragged down and yucky. Calling your energy/capability "spoons" again gives a more tangible image and concept that's easier to keep hold of and remember.

(As an amusing side story, my hubby explained to an older man who is dear to us about spoon theory... or rather, he tried. We both suspected the didn't quite get it, but that something of it clicked anyway. Later when he asked how I was, and I said I was worn out and tired, he nodded and gave me a you-and-me smile and said, "That spoon's getting down to the bottom of the jar, isn't it?" I chuckled and nodded agreement... for all that he hadn't gotten the original meaning of Spoon Theory, his analogy was equally applicable.)

As to your professors, I have no idea how better to handle that. Some people are just jerks, whether they are in positions of authority or not. Unfortunately there is no way to avoid them. Perhaps folks with more experience with college can provide some insight on ways to manage?


#4

I was healthy when I went to college and I have nothing but admiration for your determination to continue!! Fight for your rights!!


#5

I don't agree with the way you were treated by the professor, however there is a possible reason for her behavior. Some schools pay their instructors per student, so if you drop the class and all the students on the waiting list have found other classes she loses out on that income. Also to many unfilled classes look bad on her record. While this doesn't justify her behavior it could help explain it. When you understand it is her problem, not you, it is sometimes easier to let go the anger. You need to let go of the anger for your own health.


#6

Hey,

Thanks so much for your support. In response to your story, I hate that "me too" smile regarding feeling tired/worn out too. I know I'm not the only person in the world who feels tired but the amount you are able to do when you're tired with lupus is a lot less than when you're just tired...if that makes sense. I remember what it was like before lupus and what it's like now. Similar to the spoon theory—it kind of feels like there is a hole in the gas tank so it’s never truly full. I can’t drive as far. I have to fill up my tank more often. And, if I’m in stop and go traffic I run out of gas a lot faster than if I were driving straight to my destination.

When you’re constantly running low on gas you’re much more aware of those MPG’s. If I want to make dinner for example I think about whether or not I have enough energy to go to the store, bring the groceries inside, prepare a meal, and clean up. If there is a line at the grocery store, if I can’t find the ingredients, etc. those are all extra miles for me that use precious gas. When there is nothing wrong with your car’s gas tank you just get in your car and go. That is probably the biggest difference between normal and not and the best way I can explain it. I took that for granite before. All of us do until we get sick with the flu or something and then realize how hard it is to do basic things, but the flu is not permanent. Lupus, however is a permanent condition as we all know—

I think since others can not see the way we feel there will always be this disconnect.


Talencia said:

I have no idea if this is a healthy suggestion or not, but here goes... I myself tend to kind of personify Lupus. In my mind, Lupus is its own entity, a silent, oblivious, vicious force of nature. It doesn't really help a lot to think of it that way, as I still can't fight it face to face, but it gives me something to rage at.

I bring that up because it also can provide a means of communication. It can add a lighter, tongue-in-cheek note to things that otherwise are inexplicable. When your boyfriend asks what's making you hurt, you can blame Lupus, or call it The Wolf. Create your own code for talking about it, even when it's just the two of you. "The Wolf is chewing on my foot," for example. It gives Lupus a fierce face that is relatable, and helps give an illusion of a 'why' to the situation. There is no why, but if we see Lupus as a beast, something that attacks and causes pain, it can help to combat the frustration of not otherwise having an answer as to WHY a foot, a hand, our whole body hurts. Using Spoon Theory also can help when you have no way to explain feeling dragged down and yucky. Calling your energy/capability "spoons" again gives a more tangible image and concept that's easier to keep hold of and remember.

(As an amusing side story, my hubby explained to an older man who is dear to us about spoon theory... or rather, he tried. We both suspected the didn't quite get it, but that something of it clicked anyway. Later when he asked how I was, and I said I was worn out and tired, he nodded and gave me a you-and-me smile and said, "That spoon's getting down to the bottom of the jar, isn't it?" I chuckled and nodded agreement... for all that he hadn't gotten the original meaning of Spoon Theory, his analogy was equally applicable.)

As to your professors, I have no idea how better to handle that. Some people are just jerks, whether they are in positions of authority or not. Unfortunately there is no way to avoid them. Perhaps folks with more experience with college can provide some insight on ways to manage?


#7

To be fair, what I meant by the "you-and-me smile" is that it was a shared understanding of the spoon idea. Like he was speaking to me in a secret language that most others didn't understand. It was really rather sweet, and made me smile. In its own way, it made him feel special to be included into my world that way, and because it made him feel good, it made me feel good too. He's a very loving gentleman who treats me like an adopted daughter, and I know he'd never in a million years intentionally do something to hurt me. For myself, that helps a lot to take a more optimistic view of his responses to me. He's also one of those folks who will take one look at me and know when I'm dragging, and is very sympathetic and gentle. I deeply value people in my life like that, and I am blessed to have quite a few. :)


#8

I don’t know the spoon thing, how does it go?
I learned to have a jar of marbles representing eneryenergy, and take out marbles ad I use energy. In my imagination, that is. Since I’m visual, it works for me.
There’s nothing wrong with all your old friends, they just want to run around and have fun. They don’t want to be mean, but it does feel mean. Most of my friends are sick or older. I can go out to lunch, but running by the mall for two hours after lunch knocks me down. I might choose to do it. But I want to know in advance, mostly.
And some people think being sick is just an excuse to be lazy. Or they’re afraid they’ll catch it, or it scares them. Over time, I’ve learned that I am actually choosing not to put myself through stuff, like sitting on the beach with friends and it making me sick. Once I started seeing it as my choice, I lost a lot of the frustration and anger attached. I’m sorry I don’t have more fun, but I need that energy for making dinner, or other stuff. I don’t talk to most people about my health in detail- I just say I’m fine unless they ask for more. Most people don’t want details. If they do, I tell them I’m tired a lot and in pain. I tell lots of people I have lupus, and I think that isn’t tmi. The details are. I have
kidney problems now, and diabetes, and gout (!) and swollen legs and feet, and all the meds I take and etc etc etc…and most of my doctors don’t understand each others’ point of view because it’s so complicated. So I try to understand it and I’ve given up thinking there is a magical cure out there, too. My job is to take enough care of myself that I’m not feeling worse than usual.


#9

Your marble imaging is very close to the spoon example. If I had the spoons or marbles right now I would find the web site for you, but at the moment I'm feeling like I'm on a fast tumble down the back side of Ratune pass. That is about a mile straight down of Rocky cliffs and jagged boulders. My body and mind just hurt, I'm hanging on by a twig.


#10

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


#11

Sadly your story is very common with us that have chronic pain and illness that only we can truly understand. I have started reading a book recommended here on another thread called “How to be sick” by Toni Bernhard, it is helping understand my own feelings and helping to,deal with them first.


#12

Ahhh, I see...yes people like that are truly priceless. Even with my boyfriend who still does things and says things that show he doesn't understand there are also times when there is no explanation needed. He can see the pain on my face. For instance yesterday I was in a lot of pain after doing the laundry and he offered to rub my back. Oh, what a difference that makes in how I feel! Now, if I could get a back rub every day...dare to dream lol

Talencia said:

To be fair, what I meant by the "you-and-me smile" is that it was a shared understanding of the spoon idea. Like he was speaking to me in a secret language that most others didn't understand. It was really rather sweet, and made me smile. In its own way, it made him feel special to be included into my world that way, and because it made him feel good, it made me feel good too. He's a very loving gentleman who treats me like an adopted daughter, and I know he'd never in a million years intentionally do something to hurt me. For myself, that helps a lot to take a more optimistic view of his responses to me. He's also one of those folks who will take one look at me and know when I'm dragging, and is very sympathetic and gentle. I deeply value people in my life like that, and I am blessed to have quite a few. :)


#13

Hmm, I never knew that. I'm not sure if my school practices that policy but it certainly puts things in perspective.

Doggie said:

I don't agree with the way you were treated by the professor, however there is a possible reason for her behavior. Some schools pay their instructors per student, so if you drop the class and all the students on the waiting list have found other classes she loses out on that income. Also to many unfilled classes look bad on her record. While this doesn't justify her behavior it could help explain it. When you understand it is her problem, not you, it is sometimes easier to let go the anger. You need to let go of the anger for your own health.


#14

I couldn’t agree more that you have to put things such as choice in perspective. I could go over to my friend’s house for a party but am I doing it because I really want to or because I feel obligated. I think it’s important to realize when you say no to an activity it’s not because you technically can’t but because you choose not to, and it’s also important to realize when you do say no it’s not because you’re being selfish but you’re making a conscious choice to put your health first. If you think going to the mall for 2 hours is going to end up causing pain for the rest of the day or longer than it’s not worth it. It can feel alienating especially for big stuff like weddings, birthdays, and so on.

I try not to worry what others think because I know it’s a waste of time and a strain on me. Sometimes people’s judgments creep in though. When my boyfriend’s friends invite us to something and I usually decline I know it bothers him when they ask or point out that I’m never there! I’ve had people say dumb stuff like they thought I wasn’t real because he talks about me but I’m never out with him! It gets to me because I know it’s hard for him to explain as well. It’s not as much of a problem now that we have been together for a while and since we are getting older, but when you’re young with lupus other people your age just don’t get it! Now, if others asked me to go to yoga or binge on Netflix instead of beer I would definitely be up for that lol.


Jane S. said:

I don't know the spoon thing, how does it go?
I learned to have a jar of marbles representing eneryenergy, and take out marbles ad I use energy. In my imagination, that is. Since I'm visual, it works for me.
There's nothing wrong with all your old friends, they just want to run around and have fun. They don't want to be mean, but it does feel mean. Most of my friends are sick or older. I can go out to lunch, but running by the mall for two hours after lunch knocks me down. I might choose to do it. But I want to know in advance, mostly.
And some people think being sick is just an excuse to be lazy. Or they're afraid they'll catch it, or it scares them. Over time, I've learned that I am actually choosing not to put myself through stuff, like sitting on the beach with friends and it making me sick. Once I started seeing it as my choice, I lost a lot of the frustration and anger attached. I'm sorry I don't have more fun, but I need that energy for making dinner, or other stuff. I don't talk to most people about my health in detail- I just say I'm fine unless they ask for more. Most people don't want details. If they do, I tell them I'm tired a lot and in pain. I tell lots of people I have lupus, and I think that isn't tmi. The details are. I have
kidney problems now, and diabetes, and gout (!) and swollen legs and feet, and all the meds I take and etc etc etc....and most of my doctors don't understand each others' point of view because it's so complicated. So I try to understand it and I've given up thinking there is a magical cure out there, too. My job is to take enough care of myself that I'm not feeling worse than usual.

#15

When I first started college, back in the stone age, pre-lupus, I consistently made the dean’s list. I attempted to go back still pre-diagnosis but very symptomatic and I had a required advanced science class. Of the 4 classes that semester it was one of the 3 I had to drop. I commend you on your desire to continue your education, but in the science class, it required gathering our own specimens, something that I didn’t have the energy to do.
So although I was the girlfriend of the head of DSS, there was no accommodation that would have allowed me to stay in the class. I do feel like those that work for students with disabilities do all that they are capable of doing. I was a special ed teacher in CA and loved when I could help someone, however rarely, there were times when my best just wasn’t enough. If it is something like that, perhaps they could suggest another student or TA to assist with the physical portion of the class, or a class of equal credit.
However it turns out, I applaud you on your determination.


#16

I was dx in 2010 and I have lost many "friends". One of my closest friends who was there for me when I was bedridden seems to think that since I am up and walking around that I am miraculously "CURED". If my mother who I live with asks questions like, "why is your ankle hurting?" "What did you eat yesterday to make you this way today?" If my mother says stuff like that and she goes to some of my doc appointments, there's no sense in me attempting to explain anything to anyone else.

Am I left alone? Yes.Alone and at peace. I do what I want. No one expects nothing from me anyway so why bother.


#17

Autumn, are you really at peace? I think that there is a lot of hurt and anger buried in there. I think that most of the wonderful people here have been there. You have people that understand here. Let them into that cocoon you have built around yourself in self-defense so that you can become the butterfly you can be. Remember you are still you, the only difference is you have lupus.you are not lupus, don't let it define you.


#18

I have to agree! My daughter also has Lupus and thank goodness she has not had too much trouble from any of her professor's. I assure you though, if she did, she would go straight to the Dean!

Nikki said:

I was healthy when I went to college and I have nothing but admiration for your determination to continue!! Fight for your rights!!

#19

Nikki, You are an inspiration. It is hard going through college even in the best of health. Keep going and stay the course. I know that some instructors don't like to accommodate for students that don't fit their teaching mold and make it harder than it should be. Just remember that by law they have to, so keep fighting. I remember having a student that was brilliant but because of a brain injury he couldn't get his grammar on his papers correct even though his talking was perfect. I wasn't aware of his disability when I got his first paper and so I gave him an F. When he approached me and explained what was going on we agreed that he could tape his assignments instead of typing them out. Yes it did take me extra time and when there was a quiz I had to schedule a time I could sit with him and do it orally but my feeling was that if someone wants to learn as an instructor it is my job to help them as much as I humanly could. I pray that you can find instructors that are more than willing to accommodate you.


#20

Thank you for sharing your story and advice. It’s nice to hear the perspective of a professor. The university I attend is a fairly small private school (13 in a class tops) and I’m not sure if that may or may not be part of the reason I had trouble this past spring. So, this may not be an issue that is handled with as much frequency as bigger universities. To be clear I am registered with Disability Support Services so all the appropriate measures, papers, etc. were in order. I should have mentioned in my original post that as soon as I felt the conflict with my professor was not going to be resolved I contacted my advisor. It was only after I contacted my advisor that I received an email from my teacher which was a complete 180 from her original emails. I appreciated that she did what she was required to do in the first place but needless to say I felt it was a bit insincere.

To be fair this class was a little different because it centered on community service and ironically art therapy as a tool for healing, so I suppose my teacher was afraid that if I missed too many classes I could not make up the “experience” which I do understand. However, only 5 classes were actually outside of the classroom and involved the community service part of the course. The rest of the classes were on campus although it really didn’t matter because I commute so either way I’m driving somewhere. I attended every class except for the first day because I had a kidney infection and the flu.

I understand the position of professors which is why I communicate before problems arise. I would never expect a professor to accommodate my needs with or without registering with DSS if I failed to communicate those needs as well. Registering with DSS doesn’t mean I am exempt from personal responsibility. It is still up to me to communicate before class if I will be absent and before assignments are due that I need an extension. I’ve been a non-traditional student for a long time and way before health was even an issue experience has taught me well!

But, where does the “unofficial” code of conduct enter? Beyond the requirements between student, professor, federal laws, and university policies—where does the empathy, the respect, the tangible embracing of diversity belong? If there is a student with a brain injury or damage or any other REAL disability it’s not always easy to approach a stranger and say, “Hey, this is my story, and I need help.” So, I commend the teachers who do exercise a certain amount of sensitivity beyond what is required!

This particular class was based on breaking down barriers, opening up emotionally with others and with members of the community, big life lesson stuff instead of papers and tests.This is why I was so upset that the class began the way it did and I dreaded going each week which is a shame because the experience could have been completely different. At the end of the day I may have a letter that requires the university and professor to work with me as long as I have gone through the appropriate channels but for the 15 weeks I’m in class I’d rather figure things out with the help of rather than in spite of my teacher.



Ann A. said:

I have spent all of my adult life with lupus and most of that as a professor. I wholeheartedly agree with the person who suggested that you contact the office at your university that is charged with providing services to students with disabilities or special needs. Some of the people who work in that office are experts at working with students to identify "reasonable" accomodations. They write a letter that the student gives to each professor at the start of the semester outlining what those accomodations are to be.

I am required to include a paragraph in each syllabus instructing students who need accomodations to visit that office and bring me the letter. This is not a measure of my compassion it is a matter of expertise in both disabilities, university policies, and both state and federal law. For me, as the professor, to decide what accomodations are reasonable violates university policy. Without that letter from the experts, I am also in danger of being charged with classroom practices that are unfair. Remember, in theory, professors are required to treat all students the same and to hold them all responsible for meeting identical course requirements. Students who come directly to me with a request for accomodations put me in a career threatening position. The most difficult students are those who want accomodationw from me but who do not want to be identified as "disabled." I cannot help them. They need to get that letter and give it to me asap.

In a class of 40 students, I have had 20 who asked me for accomodations with only 10 bringing me the letter. Extrapolate that across three to four classes. I need that letter. No letter, no accomodations. The conversations with students who want accommodations but refuse to get the letter can become very tense. I must adhere to policy. They too must adhere to policy. The number of Americans with disabilities both visible and invisible is astounding. That is why schools receiving federal monies must have polices and offices that make decisions about what accomodations are reasonable. It is not a one on one relationship between student and professor. Though many professors now work hard on universal course design.

Good Luck working with the experts who can write that letter telling professors exactly what accomodations they