The University of BYDLS

 

I recently started dating a new guy–we’ll call him “T”. He’s going to a local university for his Master’s in Industrial Engineering. He’s from India, where he did his undergrad work. Our first date was spent talking of current events, religions, cultural differences, and politics. I always hold my own in our discussions; however, I do feel inferior.

I confessed to T that I was intimidated by him. He laughed and asked why, and I explained:

My endometriosis symptoms appeared a month before my senior year in high school. My senior year was spent full of missing classes due to pain and/or doctor appointments and/or surgeries. My school performance suffered, as did my grades. I did go on to graduate and be accepted into a local university with plans to become a history professor. Between medications and pain, I made it through two semesters which were littered with dropped classes before I had to withdraw completely. No degree, no history tenure.

T told me not to think in terms of degrees and classes. He pointed out that I was fortunate–while I was stuck at home tending to my body, I was also able to explore many areas that interested me and not be bound by a syllabus or a textbook. I built my own library full of books. When I didn’t feel up to reading, I could always watch documentaries. I could roam the internet for current events, and not just be limited to a half hour news show. I could let my interests take me anywhere I wanted to go, and I did.

Because of my illnesses, there are many social norms that I don’t fit into, so I’ve had to make them fit me, or disregard them all together. One of the last norms that I was hanging onto was my lack of a degree. I’ve met many Spoonies that are very intelligent but were also unable to get a degree, and I don’t judge them or look down upon them–and I enjoy talking with them and learning from them–so why do I do that to myself?

T was right. I shouldn’t let my lack of degree take away from the knowledge I have gathered over the years because of my own studies. I should be proud of what I’ve learned, and be confident in my discussions with others, no matter what their formal education level may be.

I don’t let my illnesses define my body, and I shouldn’t let a piece of paper/lack thereof define my intelligence.

 

Article written by staff writer, Sonja Peterson

Sonja is a cat mom with endometriosis and fibromyalgia. She also had a hysterectomy for adenomyosis. She blogs about her experiences at The Mud and the Lotus www.mudandlotus.com. Follow her on Twitter @sonjathegreat.

©2019butyoudontlooksick.com
  • terry563576

    The bydls university and its working methods are really great and those ways are really praiseworthy and effective as well.

  • Nancy

    Like Elspeth, I understand, but from a different side of the coin. I went to school and recently finished my doctorate, but I was constantly fighting sickness and knew something more was going on during that time that just hadn’t been figured out. During the year that I worked on my dissertation, I was diagnosed with IC and fibro, and within 3 months of finishing the degree, I became so sick that I had to quit working. Finally someone figured out that I had chronic hyperventilation syndrome which was not only messing with my lungs, but the lack of carbon dioxide had affected practically every system in my body along with still having the IC and fibro. I’m sure that the stress of trying to finish the degree program did not help anything in that last year. I’ve gotten better in several ways, but have switched to a different path regarding work since I can’t do what I used to. I am hopeful that this path will lead to me working with my degree & education in a different way, but I was very upset at first about the changes and especially the school loans that may never get paid off as a part-time employee.

    Just like our illnesses don’t define us (though they may certainly try to do so at times), a degree doesn’t define a person.

  • Thank you all for all the wonderful feedback!!

  • Hannah Rose

    Thank you so much for writing this. It’s hard to remember that the “normal” path isn’t the only one. Those little pieces of paper, be on them what may, can be pretty hurtful. But you’re right, I don’t judge anyone on here or wherever that is ill if they don’t have a college degree…why should I ever judge ME.

    Thanks for the reminder.

  • Hi Sonja
    I have my degrees – got them before I was diagnosed – although I was sick a fair bit while I was in college. So now I’m a highly-qualified person who can still only work a few hours a week and needs an afternoon nap. (I could have done that without finishing high school.) Learning how to make the most of whatever life you’ve been given – that’s true wisdom, – and you don’t need a degree for it.
    Iris

  • Nanci Tomasetti

    This post really spoke to me. I have lupus and fibro, etc. etc. and experience brain fog too. Sometimes I sit for 5 or 10 minutes trying to find the word that I know is in my head but won’t go on my tongue and out my lips. I too was a speed reader, and yes that’s gone. I find myself really quiet when among people on a bad foggy day. My husband is great but it still hurts when I know what I want to say and can’t say it. My reading and comprehension has gotten a little better this past year. I torture my family when I try to find a word and start describing what I mean. It’s like 20 questions with no real answer. I “made” my doc get me tested and I had an IQ loss (like I didn’t know it). My doc said that it didn’t matter…I was a beautiful, kind person who was loved by friends and family. He wasn’t making little of the problem, but was trying to have me look beyond it. And I guess he is right because it is NOT the disease or the symptoms of the disease that define who I am. I think that when you are chronically ill it’s sometimes hard to realize that you are more than your disease. So I try to be the best me that I can be. What’s interesting is that every day is different and therefore I’m a different person every day.

  • Elspeth

    I understand, though from a slightly different aspect. Before I got sick, I managed to graduate with a Bachelor’s degree, and then went on to earn my Master’s degree, with honors. Then, just as I was ready to embark on the world and put my knowledge to use, my body began failing me, a little bit at first, but my decline feels like to me a runaway train. I have all of the textbooks from all of the courses I took during university and grad school. Now they stare at me, sort of like Snoopy when he’s doing his vulture impression, as if to say that “You are such a loser. Look at all of the money you spent on your education, and for what?” I know it would be better to pass these books along to someone or some organization that would appreciate them and make use of them, but that is so very hard to do. These books represent the years of my life invested in a future I will never get to live. So I sit here, stuck and finding it so hard to move on. I envy those who are making such a difference in the world, where I am unable and perhaps unwilling to do so.

  • Deb

    wow! I loved this post!!!
    very often i feel bad that i was never able to finish college. I love learning, and i loved being in the classroom setting. But that all changed…

    however, i love how you switched the perspective that we are in our own university. my house is filled with books. And the interesting thing is that since becoming a spoonie, ive realized that what i really love learning about was NOT my major in college!! so now i get to study my own things (many of which are health related).

    Just the other night i was in bed with a “textbook” type health book – and i asked my husband if it looked funny that i was reading a textbook for pure enjoyment. He said “nope, whats funny is that youre taking notes!!!”

    thanks for the great post … i guess many of us can relate to this.

  • Carolynn

    Needed to read this… thank you for putting it out there.

  • Your T sounds like a nice man, just like my husband was. My Tony always encouraged me on, telling me I could do whatever I set my mind to do. It didn’t matter that I may not have been able to do things the way “normal” people do. And he always applauded my results and bragged (to anyone who would listen) about the things his wife did. He never put me down because I only had a high school diploma. I sure do miss him!! Some days I really need that encouragement to go on.

  • I can relate to this article. I have the Bachelor’s, but can’t use it right now. The biggest thing I miss from all this is working/having a career. Still some days I wake up and can’t believe that fact. I have to be honest. Chronic illness seems to force you to re-invent yourself. I have been able to stay home and watch my daughter grow. She has also developed a strong interest in reading since some days I have “low-energy days”.
    My formal training is in education/teaching, but seems as though God wants me to use my teaching/helping skills and compassion in another way. You never know how your true life experience can help another person not just a piece of paper. I kinda think its ironic that lupus/and a butterfly go hand and hand. A transformation takes place. It may not be easy, but the butterfly does emerge.

  • Jen

    I have a BA, but was only able to work for a few years before going on disability 11/00. There were “non-trads” in several of my classes. I was always so impressed at the knowledge they brought to class and how much they had to contribute. Even if they never went back to get their degree, they had amassed life experiences that have nothing to do with a level of education. I envied that.

    I also echo what others have said about the information we do have. How many people graduating college can explain what our illnesses are, the meds we take, the type of docs to see, how illnesses are diagnosed – both the process and the tests needed. We knew things we WISH we didn’t. I can tell you what my 15 meds are for, what the difference is between 2 seemingly identical illnesses (which in college were never defined differently), the typical time to receive xyz diagnoses, the list goes on and on, as each of us knows. My husband is in ill health and I’d give anything not to know his ejection fraction (to include what is considered normal), what a VO2 test is and the purpose of it, or how many times he stops breathing every night.

    As others have mentioned, we spend many more hours researching our illnesses, treatments (including the specifics of meds), alternative treatments, specialists, the *best* specialists/hospitals… again the list is endless. For example, my degree is in psychology and one of my invisibles is bipolar II. Had I worked in the mental health field and been diagnosed with this years before I was, I would have aced a few classes. Doctors don’t know what it FEELS like to be us. That’s something you can’t learn in a classroom.

    Thank you for writing this.

  • Jen Martin

    Er….too fast typing…Do not let the illness define who you are 🙂

  • Jen Martin

    Do not let the illness define you are…EVER…I’ve been learning that in the last few years. Much love to all.

  • Natty

    I got sick during my last year of uni and managed to graduate thankfully.
    I had my dream job in the field I qualified in but had to give it up because of my health.
    I work as a manager now in the NHS and I still get looked down upon by Doctors because they think I haven’t learned as much as them because they did a longer degree.
    The thing is, us spoonies have learned so much about our bodies, and pain, and depression, and empathy and understanding.
    You cannot teach that and some Doctors just do not understand ANY OF IT!!
    This in my opinion makes us just as worthy as them, and in a practical sense, maybe more so.
    T sounds great. Keep hold of him!
    Here’s hoping we can all find a T of our own!
    Knowledge, intelligence and worth are not proven by our titles or a piece of paper, but by how we behave.

  • KittyGotClawz

    I find this so inspiring! Here recently I found a place where I can do my last year of high school online and I can actually afford it. That’s my first step. I’ve always been so down on myself about not finishing high school. I have systemic lupus (among other issues). Sometimes you never know when or how it will interfere. I’m so excited, and yet so terrified I will fail in my goals I’ve made for myself. But your new friend is right. I shouldn’t let it intimidate me about what or how others are or went about their education. I should just do ME and succeed MY way. Eventually I want to go to college. I’m not trying for a degree or anything. I just want to take a class here and there. Keep learning and broaden my horizons.
    Thank you for being so inspiring!

  • Sonja, great article. I also have felt the way you do many times. I had a job that I was a supervisor for over 13 years, and had to give it up because I was diagnosed with Lupus and then a year later with MS. I thought my purpose was lost and was really depressed. Then I thought of writing a cookbook with my Italian family recipes for my nieces for a Christmas gift last year. That is when my life changed. Since then I have been writing a more comprehensive cookbook and through a friend it will be published. I also have learned so much from this experience and it has been so much fun learning about my family recipes that were my grandmother’s and great grandmother’s who came from Italy. I now have created a blog and am on many social network sites to help promote the upcoming book. So, you can see I thought that I had nothing to give and no purpose in my life, and low and behold look at me now. I still battle Lupus and MS on a daily basis but I have other avenues now to distract me and try to learn as much as I can. I will close with a quote I heard once, ” make your passion, your purpose.” Be strong and confident. <3 🙂

  • The reality, speaking as a cat mom with fibro, AND my Bachelor’s degree, is that my degree is truly not worth the paper it’s written on, and it’s honestly NOT paid for itself in increased income since I received it in 1997.
    The best education, truly is the one a person gets from experiencing life, and pushing themselves to expand their horizons, at their own best pace.

  • I do agree that there is much more to being intelligent than holding a degree. My biggest issue is not that I don’t have my degree, it’s that I have brain fog. I am a very intelligent person, but oftentimes, my conversations with people who don’t know me very well do not convey that. I have so much difficulty thinking of the right word that I mean to say, that it implies that I have a poor vocabulary. I forget basic facts very quickly, and often lost my train of thought in a conversation so that it makes me seem somewhat dense!

    All of this is understood and accepted by those who also suffer from brain fog, but those who’ve never experienced it can’t possibly “get it.” And, with brain fog, it is so challenging to read anything educational (or watch a documentary) that despite having the time, I don’t have the focus or ability to absorb much.

    With both fibro and Lyme, I have double the brain fog. It’s awful. I had to re-learn how to read, and it is so challenging. Before getting sick 10 years ago, I was a speed reader my whole life. I’ve lost the photographic brain abilities that enabled me to do that, so I had to completely learn how to read in a different way. I read so much over the years before I got sick (I learned to read at 2, and got sick at 31), that it is not a habit easily broken. Even now, 10 years later, I find my eyes often moving swiftly through the pages and then realize that I have no clue what I was looking at, and then it takes me a few minutes to try and remember where I was last actually reading, and find my place again. It makes it virtually impossible to read much.

    I wish there was a way to stop the damage being done to my brain that creates this, and to heal the existing damage. I don’t want to live this way anymore. Of all of the symptoms that I have, brain fog is among the worst. I would not mind being physically laid up nearly as much if my brain still worked properly!!!

  • Sonja l. I love your attitude! In life there are so many avenues of learning. I am one of those Spoonies who was unable to get a degree yet I learn something new every day. I am on the internet reading, listening to others and sharing and teaching.
    Thank you beautiful lady!

  • flutewoman

    Hi Sonja,
    I’m also a cat mom who suffers from Endo and Fibro. One of the “norms” I”m struggling with is not being able to work a full 40 hours a week. I feel inferior and lazy. And somewhat dependent on my husband to support us and our cat.

  • Yes! This is so true! I watch so many documentaries on NetFlix and I’m constantly online reading up on new things. It’s educated me in ways that no school could!

  • Katie

    You have been battling so much for so long, and you are still so strong. I’m so glad that you realize how amazing you are, because I know that all your others friends and I are really proud of you. You’re an inspiration Sonja, thank you, for everything.

  • Well said Sonja! I love your attitude!

  • Sonja I totally agree!!! The degree is just a piece of paper… learning and growing is what is important!