How school affects how you handle your health

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  • September 15, 2011 at 11:38 pm #6440


    We’ve talked about dealing with symptoms at school before, but didn’t get too much into how being in school can change your attitude towards your health and how it can affect your social life at school. It can be a pretty big deal for those of us that are students, whether in highschool, college, or university, so I figured I would make a thread for it.

    For me, going back to college with this whole MS thing looming over my head has really changed how I view my health. I was feeling really positive about it all in general before I actually started classes and was blindly convinced that I would be able to get through school no matter what the challenge. I didn’t really think about how hard it really is and how much it changes everything.

    The biggest thing it has affected for me is my social life. I don’t have time to go out and see my friends that I am very open with, so I’m kind of cut off a bit from my support system. Normally I’m quite open about my health and happy to educate those that want to know more and help spread awareness, but when I’m at school I’m the complete opposite.

    I was asked the other day by another student if I have someone close to me that has MS (it came up during a conversation about our career goals, and mine is to be an MS nursing specialist). I completely froze. I had no idea what to say. The diagnosis maze situation is extremely difficult to explain to people that don’t know much about this illness, and I’m just extremely hesitant to tell classmates and teachers about my health (only my program coordinator knows that I have trigeminal neuralgia and that I have problems with my muscles but that’s it). My courses have a lot of groupwork involved and I don’t want to be that person that no one wants to work with because they’re worried I’ll get sick and they will have to do all the work (which I would never allow to happen, but people assume things). After a bit of stuttering and stammering I just choked out a “yes” and let it be.

    I have to schedule every single thing I do to make sure I don’t run out of energy (this has been really difficult because things keep changing due to the support staff strike).

    Ever since I started back at school it’s like I’ve been through back into the beginning of the grief cycle. I went from acceptance back to depression and bargaining, starting to feel a bit of anger about it all again (fueled by hearing other students talk about after school plans, knowing that I will not have the energy to do anything at all after classes and even if I did have the energy, I’d be in too much pain). I think once I get a few assignments graded and pass some tests I’ll start feeling a bit better and more confident again.

    So ya….there’s my thoughts on it. Anyone else care to share?

    September 16, 2011 at 1:58 pm #6790


    Oh yes, I want to share…

    In general I speak open about my illness,…but in school its the same like in youre situation. I don’t want to speak about it. The reason for this is the ignorance from my classmates. They ask me something about the disease but I see that they Aren’t interest in any information. They ask bacause they think it is polite when they ask from time to time. Another thing is, that I really regret the fact, that I tell my classmates about my illness. Sure on the one side it is good, bacause in this way there aren’t any speculations, why I have to go ealier from a special lesson or when I feel tired and bad. But on trhe other side it is terrible, because my classmates tell other students from my school that I am ill, nor a lot of rumors go around the school. Any time ago, a student from the other class came to me and ask me if I should die now, or if I had a kond of depressions or if I am infectious. Really, this sucks. Strange looks follow me from some student and I hate this feeling. 3 years ago our year traveled to London, I had to take my syrings with me, in the fridge of the bus. Someone lookes into it, and said: ” Oh look here are some syringes who from us takes drugs.” Our teacher said, that they are mine and everybody laughs, I don’t Know why. Maybe I am to sensitive but in this moment it hurts a lot.

    In general is the illness in school very hard. The fatigue knocks me out from time to time and I have a really hard migraine too. When I have a appointment by my neurologist it is difficult to tell this my teachers, because they don’t like it when I have to leave their lessons earlier, but I can’t deal in an other way with this, because my doctor gaves me the appointments a half year bfore the meeting. So I can’t do anything against this and I am always lucky when I get an appointment. But all in all I try to manage everything as well as I could. And it works until now. I hope also inthe future.

    And i keep my fingers crossed for you, that you bacome a nice MS nurcing specialist:

    Best wishes.

    September 20, 2011 at 3:53 am #6791


    So sorry to hear you’re having such a hard time at school, Michi. I am completely shocked that the teacher told the class that the syringes were yours, that is so unprofessional! It can be so hard to decide which classmates to tell because even if you are close to them when they find out, that might change, you know? I’ve been hiding it for the reason you mentioned: once people find out, there is no taking it back and it can follow you around from school to school. Seems like the only time you can make it go away at school is if you move and start over in a new city :S But having it all be speculation instead can be just as unpleasant I imagine. I guess I’ll find out tomorrow since I’ll have my cane with me (though I’m feeling very positive right now because of a wonderful group of volunteers I work with). I actually missed classes today because my legs were cramped up so badly (they’ve gone numb now for the most part so it’s easier to get around).

    Trying to make visits to the doctor work with a class schedule can be so hard. Like you I find out when my visits and tests are well ahead of time, but because of this rescheduling them is very difficult (if I have to reschedule I could be waiting for months for a new appointment). I have to miss a full day of classes on Wednesday this week because of an appointment but my teachers seem pretty OK with it since I don’t have any tests or homework due that day. Lucky for me, they put everything they do in class online so I can catch up on my own time. Do they still give you a hard time if you bring in a note from your doctor?

    Big hugs for you and nothing but the best in life.

    September 26, 2011 at 5:41 pm #6792


    Yes this is really hard but next year I am ready with school and then begins a new life, a new beginning maybe I will study to become a teacher or I learn something else. But this means, that I can start new and I think I will not speak so open about my situation. At first I will look, who I can trust in.

    In the future I will handle it like you, because I am afraid of the same situation like in the school I am right now.

    But this is not allways easy. For example my foot, he was numb last week. Not much but enough that I feel it and it makes me really unsure. And I couldn’t hide my feelings, so a lot of them ask what is wrong with me, why I am so quiet and if I have a problem. But allways in the way like: “I am not interested and I ask because it is polite.” But I have to say that I am very happy about one person, a friend who sees me like I am without the illness and that gives me courage and a good feeling, like your group of volunteers.

    I am sorry to hear about your legs. I hope it is better now?

    Oh this is really good from your teachers, but in our school there is nothing with facts online. Well but it works, I ask classmates.

    My teachers don’t like it when I have to go earlier but when I show them my proof of the appointment they say it is okay. Some of them understand me, but unhappily most of them think not like there nice colleguas. :D

    But in half a year it is over and than I hope everything will be better.

    Thanks for your wishes and for you : Best Wishes :D

    October 4, 2011 at 11:00 am #6793


    It is so important to find the people you can trust. Yesterday I told a classmate, and I’m really surprised by how he reacted. Of course there was that surprised “no way!” look at first, but it turns out that he has a friend with MS and we ended up having a conversation about different theories about what causes it. Such a relief! Keeping everything a secret was breaking me down, it was just too much weight on my shoulders. I have good days and bad days with my legs now, but my eyes aren’t making much sign of improvement (I have blurred patches in my vision among other things). I’m hoping to go back to the MS clinic at the end of the month though, so we’ll see what my doctor says. All the stuff online for my courses isn’t working out too well (some students can’t log in to the system so the teachers are slowly just not using the program). I have an appointment this week with the disability counsellor at school, so that should help *fingers crossed*

    So what do you know, there is still light at the end of the tunnel :P

    October 6, 2011 at 10:36 am #6794


    Update! Part of me was thinking that this classmate would just kind of fade away and stop talking to me. The complete opposite has happened.

    Yesterday we had to do a partner assignment that involved doing some reading and discussing what we read. I didn’t have to ask for a partner, he just assumed we would work together. When I got a really bad shock from L’Hermitte’s, he just looked at me like “I know what that is”, gave me time to catch my breath, and we carried on. When he noticed I had to close one eye and hold the paper we had to read a few inches from my face, he read the paper to me in a way that didn’t make it obvious that he was reading it to me (asking me questions about it but quoting the paper in his questions so I didn’t have to read it). Because of that I was able to put the paper down, open my eyes, and do the work without it being obvious that to everyone else that I couldn’t read it. He always holds doors open for me and waits for me when I have to walk slower, never gets between me and a wall (since sometimes I have to lean on the wall for support), and shakes his head and giggles at me when I hold the door for him :P

    I’m really surprised and grateful by how supportive this person has been and how much they’ve helped me, all while respecting my privacy (he hasn’t told a soul about any of this). He doesn’t push for me to talk about any of it, just accepts it when a problem comes up and helps me work around it in ways that don’t rob me of my dignity. Finding the right person to tell is so much better than just holding in the secret.

    October 10, 2011 at 1:23 pm #6795


    Wow. It is so amazing to hear, that a person like your classmate exists.

    I have never thought this could be real. A person like him is like a present. No curious questions or strange looks at you.

    And yes I agree, it is really important to find somebody you can trust in, in everything, and I hope that your classmate can be this person for you.

    Like you said, the whole thing about MS is growing above my head, the weight of this secret is to heavy and sometimes this knocks me down, not the MS but the thought about this disease.

    The thing with the shock from LHermitte is really bad. I have the same problem and it is terrible, everytime I move my head to my chest (and this is always when I read at home or like you at school)I feel this pain. I dont like it much, but who do?

    I hope this is not boring for you but can I tell you something about my friend and me? We were best friends for 4 years. But in the last year we seperate more and more. Our interests changed and our whole situation is different now. She dosent understand me if I try to speak about fellings and stuff. She was not there for me, she was not independent, she does everything what her mum says. I think she has no individual opinion. Her mum was the person who told her that MS is infectious and she believe it and not me, her best friend who lives with the illness. I often try to speak with her about this, and that she has to show her parents that she can live alone, not in an own flat but that she can decide by her own and that she have to explain her parents, that I am not infectious. She always says to me that she will do it but never anything happend. Then came the time in which I need her a lot, but in this time she pushed me away and says that I am to close to her. I realy try to understand in which way and I try to make it better, but I never make it right. I tried to forget this and it works but now situations like that came again. Since her boyfriend broke up with her she trys to date every male human in our school, I wanted to speak with her but she dont open herself but exactly this is friendship, or? Talk about problems with the best friend. In this year I get more and more the knowledge that I dont trust her anymore. Now I told her about this, and now she said, that she is always there for me. BUT this is not the truth because when I really need her, she wasnt there. And now it is over from one day to another I haven`t anything to say anymore.

    I am angry and disappointed and I had to talk about my feelings, I am sorry if I tell you boring stuff :)

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