Shifting My Identity to Disability: A Personal Journey

As someone who has spent years advocating for disability rights and fostering a more inclusive environment in higher education, my connection to the world of disability has evolved significantly within the past 4 months. Over the years, I have identified as disabled, having been diagnosed with Generalized Anxiety Disorder and Depression, two conditions that I manage with medication and therapy. But even then, I found myself shifting and fluctuating when I fully identified as disabled or struggled with the idea of “Am I disabled enough to own the identity.” As of 4 months ago, with a new diagnosis of autoimmune diseases, my perspective on disability shifted profoundly.

For much of my adult life, my disability was fluctuating. I lived with mental health conditions that had periods of intensity and periods of calm. I could manage the symptoms, and when things felt particularly overwhelming, I knew there were coping mechanisms—physical activity, therapy, medication, and strong support systems—that would help me regain control. My disability, in many ways, felt temporary, or at least manageable in a way that felt less permanent. My knee injury in 2019, which required surgery and extended recovery time, also seemed like something I would get through. But with my autoimmune diseases, my reality has shifted in a way I did not anticipate.

Autoimmune diseases are chronic, often unpredictable, and affect nearly every part of my body. Unlike the temporary nature of my previous disabilities, these conditions don’t give me the freedom to “get better” in the same way. I started to experience symptoms in July of this year. Autoimmune diseases are interesting in that no one knows what causes them. There’s research that relates them to trauma, stress, or possible genetic predispositions. Or, as my nephrologist suggested, it could just be bad luck. (I chuckled a bit when he said that, if I’m being honest.)

Starting in May, it was the perfect storm of stress for me. I was working full-time with high work demands while taking a full load of classes during the accelerated summer quarters for my doctorate program. At the same time, not only did I have to help my parents’ dog cross over the rainbow bridge, but I soon after learned that my dog, Bear, who had been by my side for the last 14 years, was diagnosed with terminal cancer. During this time, I went to the gym 3-4 times a week and took flamenco classes weekly, as those spaces helped me relieve my stress.

At the end of July, I started experiencing a weird rash and swelling on my face. I went to urgent care, and they determined that I had an allergic reaction but encouraged me to see a dermatologist. I made an appointment with a dermatologist who diagnosed me with polymorphic light eruption (PMLE) - an allergy to the sun. I was prescribed a week’s worth of steroids, both pill and topical, and sent on my way. During this time, I started to feel extremely exhausted. I could not get enough sleep. I first just chalked it up to being related to all the stress and potentially going through a depressive episode. However, once I was done with the round of oral steroids and antibiotics, I exploded into a full-body rash. My skin was so itchy and hot to the touch. I couldn’t sleep or wear clothes comfortably. I had to lay in bed with ice packs all over my body. I was in so much pain and so exhausted! The fatigue wasn’t anything I had ever experienced before. Getting out of bed seemed like such an impossible task.

I sought a second opinion from a different dermatologist, and she immediately looked at me and said, “I don’t buy the PMLE diagnosis.” She ordered blood work and completed a couple of skin biopsies, and by the end of August, I was diagnosed with discoid lupus. She referred me to a larger hospital to connect me with a bigger care team, but I had to wait 3 to 4 weeks to see if my case was accepted to be taken under their care. I followed up with the larger hospital to check on the status of my referral at about the 3-week mark of waiting. They told me they never received my referral, which frustrated my dermatologist and me as we knew that was false. They then said they would “expedite” the review of my referral.

Two days later, I was denied. The reason was that my lupus was not systemic enough.

By the grace of the universe (and my mom's googling efforts), I was able to get referred to and see a rheumatologist with AMAZING reviews by the end of October. However, by the time I made it to see my rheumatologist, my symptoms had worsened entirely, making her question the lupus diagnosis. I lost my ability to stand, walk, swallow most foods, shower without the help of someone else, lift my arms above my shoulder level, and a significant amount of hair. I lost about 30 lbs in a matter of 2 months. She threw in every blood test she could think of, and for two weeks, she called me back into her office two weeks later, saying, “Not only do you have one rare autoimmune disease, but two!” I was diagnosed with Dermatomyositis and Antisynthetas Syndrome (and to tell you the truth, I still can’t pronounce the second diagnosis).

I am currently back on a potent dose of steroids and have regained most of my strength and energy. I can shower independently, walk for some time with the support of a cane, and pour a glass of water. I have regained my appetite and ability to eat most foods. Heck, I even drove myself around for the first time today after two months of being unable to! But this is only the beginning of a long, lifelong learning journey.

These diagnoses have added a new layer to my identity as a disabled person, one that is not defined by a temporary setback but by an ongoing, long-term condition that will impact my daily life. I can no longer rely on the idea that I'll “get better” in a matter of weeks or months. Instead, I must learn how to live in a body that may be in constant, unpredictable flare-ups, affecting my energy, mobility, and overall well-being.

This shift has made me think more deeply about what disability means, both for myself and for others. The reality is that disability isn’t just about physical or mental limitations; it’s about the long-term adjustments and accommodations that individuals with disabilities require to thrive. It’s about the added financial costs, along with the emotional costs, that I need to factor in. The disability tax is real, y’all. I have had to embrace this new reality—one in which I can no longer ignore the importance of self-care or dismiss the need for medical support. I’m not just coping with a mental health diagnosis that fluctuates; now, I am managing a physical condition that is rooted in my body, with no set timeline for healing.

This shift has also made me reflect on how society often treats disability—especially when it’s invisible or fluctuating. As someone with mental health diagnoses and now chronic illness, I’ve had to navigate systems that often overlook or dismiss the needs of people like me. For those of us with invisible disabilities, the struggle isn’t just in dealing with symptoms—it’s in being believed, being accommodated, and having the space to ask for what we need. I’ve had to advocate for myself, pushing back against the stigma surrounding both physical and mental health disabilities. I’ve had to learn to say no when I need to rest, and I’ve had to navigate a new sense of vulnerability in ways that I hadn’t expected. I’ve also had to push through systemic barriers (filing for disability and taking a medical leave of absence from work), such as getting documentation completed by my medical providers and sitting through meetings with HR officials, all while in constant pain and brain fog to be able to get the accommodations and disability protections I need in place.

This journey has made me even more empathetic and committed to ensuring that others in the disability community feel supported. Many of the systems designed to help people with disabilities are still rooted in outdated notions of what disability looks like. Disability is not just about a visible condition or something that can be “fixed.” It’s about the ongoing, everyday experience of living in a world that often doesn’t account for the needs of disabled individuals, especially those of us with chronic conditions that aren’t immediately apparent.

The reality of living with chronic illness and disability has continued to influence my understanding of what inclusion, accommodation, and advocacy mean. It’s not just about receiving support when you’re at your lowest; it’s about having the structures to make everyday life accessible and equitable. For me, that now means acknowledging the chronic nature of my condition and finding new ways to advocate for myself and others—whether it’s asking for flexible work hours, advocating for better healthcare access, or pushing for societal change in the way we approach disability.

It has also shown me that disability advocacy is not just about being a vocal advocate in professional spaces or fighting for policy change; it’s about making space for personal vulnerability, being honest about our challenges, and embracing the intersectionality of our identities as disabled people. It’s about acknowledging that disability is not a one-size-fits-all experience and that our society must shift to accommodate the diverse ways disability impacts our lives.

I share my story not to seek sympathy but to illustrate the complexities of living with disabilities, especially as they evolve. My journey has made me more aware of the importance of fostering a truly inclusive environment that goes beyond the legalities of accommodation and extends into understanding the personal, daily experiences of disabled individuals. It’s not just about accommodating physical and mental health needs; it’s about creating systems of care that acknowledge the complexities of life with a disability. I hope my experience can contribute to that ongoing conversation, encouraging compassion, advocacy, and accessibility.

As I’ve said before, my journey is just beginning. I also recognize that I have been fortunate that I’ve been able to be seen by specialists and get diagnosed so quickly. Unfortunately, this is not the norm. And that frustrates me so much. I, in some ways, feel that due to my area of work, I understand these systems or know what to ask for because I see them every day. But it is disheartening how many people are turned away, gaslit over their symptoms, or have to wait months at a time due to limited access to specialists. I got lucky to see my rheumatologist, and the cancellation happened right before I called, getting me in 2 days later than her 3-month wait period. I was fortunate that she had recently diagnosed someone with dermatomyositis over 6 months after seeing me. Her alarms were on, and I got diagnosed within 2 weeks of seeing her. I’m lucky that I have an understanding supervisor and worked with an ADA coordinator through HR, who has been more than supportive through my process, regardless of the systemic limitations they have to hold. I know that’s not the case for everyone.

On the hard days, these are the things that keep me going. Getting the care and support we need shouldn't be about luck. It should be a right extended to all of us, no matter what.