chronically ch(ill) – diversity as a spoonie

FUN FACT: you cannot be inclusive if you’re ignoring the invisible

I think about inclusivity often, but maybe not in the way that people would assume. Visually, I appear to be a completely healthy, happy, active person with a lot of privileges, but I have a secret struggle that I will touch on in a bit- I’m a spoonie. Haven’t heard of it? Don’t worry, we’ll get to that- but first, let’s cover the basics of the inclusivity discussion.

Diversity and Inclusion is important to me for many reasons- as an empath, I tend to feel what others are feeling, so a passion for social justice was inevitable. As a woman, I am passionate about advocating for my rights and equality in the workplace. As an individual in an interracial relationship, I have had conversations about how my children will have a different life growing up than I did, simply because of the fact that they will be biracial.  As future professors, we need to address topics related to diversity head on with compassion and the ability to step back and listen to those with different experiences. How do we address white privilege? How can we be inclusive to nontraditional students? How can we better include international students? Students from different socioeconomic backgrounds? Students who are non-binary? We have spoken before about intersectionality before, but while race, gender, and sexuality seem to be at the forefront of this discussion, I think inclusivity ranges far beyond these topics.

Let me ask you a question:
How often do you think about being able bodied?

“The Spoon Theory” was created by a woman named Christine Miserandino in an attempt to help explain to an able-bodied person what it’s like to live with a chronic illness. Imagine that every day, you wake up with an unlimited amount of spoons. Throughout the day, you use these spoonfuls of energy to do various tasks, and the next day you wake up with the same unlimited amount. People with chronic illness have a limited number of spoons, so they have to decide how they will spend those spoons every day, and what goes on the cutting board. Here is a little graphic to help explain to my visual learners!

I am an individual with an invisible chronic illness. I have a form of dysautonomia, an autonomic nervous system disorder that causes my heart rate to skyrocket and my blood pressure to plummet in response to triggers. These triggers range from severe pain, to stress, to simply standing up too fast- my heart starts pounding and my face turns white and WOOPS I am unconscious on the floor, sometimes with some very unattractive muscle contractions. I deal with severe migraines, chronic fatigue, disordered sleep, joint pain, gastrointestinal problems, brain fog, anxiety, and temporomandibular joint dysfunction all on a daily basis.  Basically, the more stressed I get, the sicker I become, and nobody can tell.My cabinet at home looks like a pharmacy. Living with an invisible illness brings with it its own set of issues (if you’re interested, NPR did a great write up about this).

In the classroom, I have to navigate lectures while dealing with fatigue and having to elevate my legs to keep conscious. If you just looked at me, you’d never know that I am not completely able bodied, which has led to professors thinking I’m just lazy or being difficult. Dysautonomia International even has a guide on classroom accommodations for individuals with this disorder. However, when I’ve told professors in the past, I am often met with skepticism, concern, and even exasperation. This past week, in fact, I had a professor tell me that having me in class on a really bad pain day is distracting, because “sometimes you put your head down on the desk because of the pain”. Also, sometimes chronic illness can ebb and flow, with some weeks much better than others. Then, you deal with the “so you’re all better now?” comments. Accommodating me, it seems, is more of a headache than the chronic migraines that keep me in bed for two days with a bag of frozen veggies on my head!

my constant dilemma

In considering inclusive pedagogy, I think we need to start inviting individuals with chronic illness and invisible illness into the conversation. Being inclusive means being accommodating, and understanding, and not dismissive toward people who are facing a private struggle. Just because you can’t see the pain and discomfort I am in, does not mean that it’s not there and making my educational journey more difficult. Let’s start having these uncomfortable conversations about racism, sexism, and ablism. It is only through open, honest communication that we can learn from one another and develop a more intersectional, diverse classroom where everyone has the same access.

24 Replies to “chronically ch(ill) – diversity as a spoonie”

  1. Thank you for sharing your story and struggle. You added a new word to my limited dictionary: ablism! I absolutely agree with you that we usually underestimate the suffering of others that we can’t see. Unfortunately, teachers would think the students would take advantage of such as a disease. I personally think a letter from the doctor stating the struggle you might have during the day is enough and teachers should always trust their students. That is why we have a section in the syllabus, stating accommodating the disabile people.

    As you said, we’re more likely to talk about racism and sexism but not ablism. We need to shed light on the ablism in the class and other diversity discussion at VT.

  2. Mohammed, thank you so much for reading! I agree, VT has the services for students with disabilities, but the documentation process to get accommodations is extremely time consuming. I have had students in the past wait over a month for accommodations, it’s so frustrating! I agree that the portion of the syllabus is super important. I’m hopeful for more improvements for the future, but the conversations are a great beginning!

  3. I learned a couple of really important things from your post and I appreciate you sharing your experience with us. The challenges you describe in creating trusting relationships with the teachers and having to describe every little up and down to everyone in order to get support are definitely spoon-consuming tasks. As some-one who has not fathomed such struggles in getting an education, I am grateful for this teaching moment!

    1. Arash,
      Thank you so much for your comment! It makes me happy that you learned a little about invisible illnesses in education, and I am excited to see how I can learn from other perspectives in this class about things I may have not considered yet!

  4. I love the spoon idea… I’ve heard it before, but never fully explained– I might have to borrow it myself! I too have a chronic condition in the form of IBS. Most days, I’m fine, but my flare ups resemble Crohn’s and come with a strict, month-long diet to prevent a subsequent flare up. That last bit is the thing that is the hardest for people to understand, including my own family. (Because if I’m feeling ok and it’s been more than like 2 days, I should be fine now, right??) For example, after the first 3 – 4 days, I’m certainly feeling better, but my diet is still too restrictive for me to have much energy to do things, and my body is still healing and recovering besides. The result is that people assume I’m better, but I still just can’t do much. Even homework can be hard sometimes just because my body is that drained.

    Maybe in favor of being more inclusive and promoting ablism, professors can ask students if they would like to inform you of this information voluntarily? For example, some professors ask students to write down some information about themselves on a note card at the beginning of the semester. Why not ask them if they have any conditions like that (or even life challenges) that they would like you to be aware of? The information would not be required and it would be “for your eyes only,” but it would certainly give you an idea of what kinds of challenges students are dealing with in your class and what sorts of things you should pay particular attention to in any semester.

    1. I like the idea voluntarily sharing information. I find it helpful to know why someone is behaving in a certain way, instead of making assumptions. Assumptions can be baaaad. In general, having that understanding can help to check one’s own reaction–reacting from a place of empathy rather than irritability.

    2. Michelle,
      Thank you so much for your comment! I am so sorry that you have to deal with IBS symptoms, I can definitely sympathize on how exhausting it can be. I like your idea about disclosing to professors, and professors inviting students to engage in conversations about things that may be difficult in their education journey! I’ll have to implement that in the class that I TA.

  5. I really liked how you broadened our ideas about what it means to be inclusive. In particular, its interesting to think about how many of our students may struggle with conditions or issues that wouldn’t be immediately obvious. I think your post speaks to how important it is for us as teachers to be flexible and to rethink what a classroom or a lesson looks like in order to meet the needs of our students.

    1. Heath, thanks for reading! I can definitely empathize with not knowing what students are going through, but I agree that when teachers have flexibility, it invites open conversation that can help students succeed.

  6. You make great points about how not all diversity is obvious (and your second image is on point). Institutionally, we need to educate educators about how to handle diversity and (this seems impossible) be empathetic. Because while I may not have empathy for a student for partying too much and sleeping in my class, I should have empathy for a student with chronic pain.

    1. Agreed! I can definitely say that when I notice a student slacking off, my first thought is not that they may have an invisible illness- even though I struggle with it myself! I really appreciate your emphasis on empathy- while it may be difficult at times, I think it is ultimately for the best that we give students the opportunity to explain their behavior and potentially disclose information about their struggles.

  7. If I’m being completely honest, your post brought tears to my eyes. It pains me knowing people can be so inconsiderate, and in some instances…downright rude. “So you’re all better now?” Would they prefer for you to be in a *constant* state of pain to prove that your struggle is real? Are people truly unable to show any mercy–and be happy for you on the days the days when things are a little more bearable?

    I am still a little unclear on the “Spoon Theory,” sorry! Is it that each category will take x amount of spoons of energy per task OR does getting out of bed, taking pills, getting dressed, and watching TV collectively take one spoon of energy? It seems like the former, but I just want to be sure!

    1. Hello! Sorry if my explanation was a bit wonky- essentially, big tasks like cleaning the house or going to visit friends will take more spoons than just brushing your teeth. However, without a chronic illness, it doesn’t matter how many they cost because you have an unlimited amount! Living with a chronic illness means deciding what you can spend your energy on, and what you have to step back from and not do. Thank you so much for your thoughts and your empathy!

  8. Thank you for sharing your life experiences and educating us on this issue. While I’m angered by professors’ assumptions of you being “lazy or difficult” (and especially troubled by the fact that you just recently had someone tell you you’re DISTRACTING) I can’t say, based on our culture and lack of education on issues of ablism, that I’m surprised that you’ve experienced this.

    I’m appreciative that you inform your readers on how to combat this issue—e.g., have open, honest dialogue, be accommodating and understanding—and as a teacher, I worry that I either don’t know about a student’s illness or that, when I do, I’m not responding in the most productive way. I wonder what some examples are of educators who’ve been most helpful for you, what their accommodation and understanding *looks like*. While I seek to be sympathetic, approachable to and open with my students, I absolutely need to have more education on how best to do so. 🙂

    1. Hello Leslie! Thank you so much for your thoughts! I agree, without knowing that a student is dealing with something invisible, it’s hard to offer the support. I think that you being so open minded is the biggest support that students with chronic illness can ask for, and I really appreciate your willingness to engage in conversation!

  9. Thank you for sharing your story; having had my personal struggle with mental illnesses and getting accommodation was a challenge. I came from a different culture where there are lack of mental health literacy and accommodating is not even an option. I can try to empathize with you going through that invisible struggle on a day to day basis.

    I completely agree with you on being accommodating, and understanding, and not dismissive toward people who are facing a private struggle. I think it is important that as future educators, we address issues related to chronic illness and disabilities in the classroom so we can ensure that everyone gets to have a safe and nurturing space to flourish.

    Another thing I would like to add is that, based on my experience, most often, people do not know how to respond or react to such sensitive issues, even if they are trying to be kind and empathetic. Often time, I struggle with coming up with the right way to express my empathy towards someone struggling. So with time, I am trying to be more accepting towards peoples reaction towards my mental health struggle, without getting frustrated. I am sure you could relate to that. Thanks for your amazing post.

    1. Farha, thank you for sharing! I can empathize with the difficulties in getting accommodation, and I loved how you brought up that sometimes it is difficult to know how to respond to sensitive issues. I think that your willingness to support others is awesome, and even when it can be awkward or uncomfortable to try and empathize with those struggling, in my experience just having support from someone is the biggest relief! I definielty relate to your points. Thank you for your openness!

  10. Thanks for sharing your story. I agree that it’s more difficult to be mindful and inclusive to diversity that can’t be seen. Your experience speaks to the difficulties you’ve had and the ineptitude of others in how best to be inclusive. Personally, I really relate to the exaggerate/downplay comic. It’s an awkward space to navigate, especially if the onus is on you to make others aware of what’s going on (since they otherwise might not be able to see).

    1. Carter- definitely! The decision to disclose my disability to professors is always kind of a tightrope walk; I don’t want them to think I’m making excuses, but I also don’t want them to expect too much from me on a bad pain day. I agree, it’s an awkward space!

  11. Hey Mary,
    Thank you for sharing your story. I found your visuals really informative and helpful for communicating your experiences. I think your last paragraph says it all, we need to include ablism in the conversation of inclusive pedagogy. I don’t think this is something that should be shared in private, it’s something that needs to be discussed more openly. People need to be more aware and more informed about invisible illnesses and how people live with them. I hope you shot back at your professor for their lack of empathy and put them in their place.

    1. Kristen, thank you for reading! I agree- it’s a conversation that I think would be beneficial if it was more open. In private, I sometimes get good responses from professors and that’s great, but sometimes they don’t respond well, and at those times I wish I had disclosed my disability more openly so I could receive support from other classmates. I’m happy to say that I spoke up for myself against that professor, but the experience has made the entire class feel much less safe and it’s definitely a delicate line to balance between defending myself, and not upsetting someone in a position of authority over me. Thank you so much for your thoughts!

  12. I really appreciate this post as this is something I personally haven’t given much thought to, so you’ve definitely expanded the scope of my thoughts with this post. Thanks for sharing your experience.
    I like what Michelle said above about asking students at the beginning of the semester if there are any challenges they’d like you to know about. Someone suggested doing that when I was helping design an online course last year.

    1. Medha, I agree! I think that disclosing to professors, and inviting student to disclose, is a really beneficial practice that can help individuals with chronic illness advocate for themselves!

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