By Kayla Beaudoin
There is a particular kind of exhaustion that doesn't show up on lab work. It lives in the draft folder: the email you've rewritten seventeen times, the one where you explain yourself again, where you try to sound sick enough to be believed but not so sick that you seem unreliable. You press send and then you don't check your inbox for three days because you cannot bear what might be waiting there.
I am a graduate student, a mother, and a person with chronic illness. These three things are not supposed to coexist. The institution was not built for the body that betrays you, and it was certainly not built for the body that betrays you while also keeping a small person alive.
What no one tells you about chronic illness inside academia is that the system designed to help you is itself a form of labor. To receive accommodation, you must first document your need. To document your need, you must see a provider. To see a provider, you must first be on hold with your primary care’s office. To get through to your doctor’s office, you must make calls during business hours (the same hours you are supposed to be in seminar, on internship, performing the version of yourself that is keeping it together). Your provider can see you three weeks from now, but the letter for school will take an additional three weeks. You may message her through the portal you were pressured by the office to set up, but it is unlikely she will see or respond to your message at all. We can’t tell you over the phone whether she will write this letter for you. And the treatment your specialist ordered that could make you feel marginally better? Insurance needs prior authorization, which could take weeks. However, the disability coordinator is telling you that accommodations exist if you can just provide the documentation. The loop is not incidental. It is structural.
By the time I rang the alarm about my most recent bout of severe anemia, I had already fallen so far that the ringing felt almost beside the point. This is how it works with chronic illness: the flare doesn't announce itself with enough warning to be professionally convenient. It builds. You push through because pushing through has always, somehow, worked before. You push through because you know what happens when you stop. Not rest, but paperwork. Emails. Phone trees. The accommodations office. Another task handed back to the person who just told you she cannot function.
I have learned to wait until I cannot move through my own home before I ask for help. I don't think this is weakness. I think it is a reasonable adaptation to a system that has repeatedly required me to prove I am suffering before it extends the smallest grace. I have had supervisors who did not believe me. I have had professors who handed me extra steps as a response to vulnerability. I have shown up sick to work and thought: this is genuinely easier than the alternative. That thought alone should indict the alternative.
There is a specific grief in new motherhood that no one prepares you for: the way your body, which has just done the most extraordinary thing it will ever do, becomes suddenly very loud about everything it has been holding. My chronic conditions did not begin with motherhood, but they exploded inside it. And I was already so tired. The kind of tired that doesn't resolve with sleep, that you carry like weather. And onto that tiredness, the system placed forms.
When I finally contacted hematology to request a letter for my school, I asked them to note that my anemia was a postpartum complication so I could invoke Title IX protections. They didn't know what I meant. My specialist, who is excellent at what she does, had no framework for disability law, no language for the institutional context I was navigating. And then there is the other problem: my doctors don't talk to each other. Hematology will tell me my iron levels should improve in two to four weeks, and that is probably true in isolation. But my body does not exist in isolation. The treatment for anemia exacerbates my autoimmune conditions. The autoimmune conditions create their own cascade of symptoms that will linger long after my iron has technically recovered. To document this fully, I would need a letter from hematology, a letter from rheumatology, and a letter from my PCP. Each of them describing one part of a picture that none of them are looking at whole. The burden of synthesis, as always, falls to me. The patient. The one who is sick.
There is also the preparation that happens before you even walk through the door of your doctor’s office. I have stood in front of my closet before a specialist appointment and thought carefully about what I was going to wear. Not too disheveled — that reads as someone who can't manage herself. Not too put together — that reads as someone who isn't really sick. I have rehearsed what I was going to say. I have made lists, organized by symptom and timeline, because I know I will have ten minutes and I cannot afford to fumble them. And then I walk in with my notes and watch something flicker across the doctor's face — the faint recalibration that happens when a patient is too prepared, too articulate, too aware of her own body. Somewhere between the outfit and the bullet points, I have become a difficult patient. A seeker. Someone who has done too much research, who has thought about this too hard. The irony is that this preparation is the only thing that has ever gotten me taken seriously. So I keep doing it, and I keep watching that flicker, and I keep performing sick in exactly the right register, because the alternative is being dismissed entirely.
And then there is what happens with that documentation once you've gathered it. The disability coordinator sent me an email asking me to submit my medical records. To a generic disability office email address. I sat with that for a long time. My most private information — diagnoses, treatment history, the paper trail of everything my body has been through — sent into an inbox I cannot see, opened by hands I do not know. And the person opening it is not a doctor. She will read my medical documentation without the context to interpret it, just as my hematologist received my question about Title IX without the context to answer it. Each gatekeeper is an expert in their own narrow corridor, and I am the only one standing at the intersection of all of them. This is what the system calls process. I call it forced vulnerability with no consent architecture around it. I did not choose to make myself this legible to strangers. I was required to.
Reaching out to a professor costs something. It costs more when you have been disbelieved before, when your body carries the memory of someone looking at you with that particular skepticism — the one that makes you feel like a con artist for having an invisible condition on an inconvenient timeline. Even now, when I reach out to someone who is genuinely kind, who responds with warmth, my nervous system doesn't know the difference right away. I send the email. I feel the shame. I close the laptop. I wait.
A person with the flu gets to be sick. There is social permission for acute illness, for the thing with a beginning and an end, the thing you can see. Chronic illness doesn't have that clean shape, and institutions — universities, insurance companies, workplaces — are not built for shapeless things. They want documentation, they want dates, they want a diagnosis code that fits neatly into a form. They do not have a box for I have been managing this for years and today I finally cannot.
What I want people to understand is this: the failure I feel is not evidence of failure. It is the predictable result of a system that places the burden of access entirely on the person least equipped to carry it. When you are too ill to move through your home, you are also too ill to chase down referrals, navigate prior authorizations, and write the professional email that adequately conveys your situation without frightening anyone. These things require executive function. Severe anemia, by definition, has taken mine.
I am not asking for sympathy. I am asking for a restructuring of what we call accommodation. Because right now, for a lot of us, accommodation is just illness with extra steps.
The bear in winter doesn't apologize for needing to hibernate. She doesn't file a request for absence. She doesn't perform wellness for an audience. She survives the season by listening to her body, completely and without negotiation. I am still learning how to do that inside a system that has never once made it easy.