Living with Autoimmune Diseases and Advocating for Myself

For most of my life, I’ve struggled to convince those around me—doctors, friends, family—that something was wrong with my body. The full story is detailed in an earlier blog post, but the undiagnosed medical issues I’ve faced have played a massive role in my mental health struggles. The mind and body are so interconnected, yet for years, no one took my physical health seriously. I have seven diagnosed autoimmune diseases now—some were brought on by chronic or complex trauma, while others just went undetected because my body wasn’t being listened to. I internalized the belief that I was just crazy or a hypochondriac. My own mother, when speaking to people on the phone, would joke, “She went to the doctor again,” laughing as if my health issues were something to mock. I envy the people whose parents fought for them, believed in them.

Once I finally received my diagnoses (I just wish the diagnoses would stop), people started to realize I wasn’t lying. They could see there was something seriously wrong with me—some rare illnesses, to boot. But instead of apologies for dismissing me for years, they began to tell me I should do better, push harder, and just get on with it. My doctors and therapists tell me to listen to my body, to slow down, but once again, my friends and family ignore my limitations. They mock me, yell at me, and get upset when I can’t do things that they think I should be able to do. Sometimes they even kick me when I pass out and tell me to stop faking it.

What used to happen? I would listen to them. I’d push myself past my limits just to avoid their judgment and gossip. The result? I’d get sick—very sick. Why? Because I wasn’t listening to my body. I was prioritizing the expectations of others over my own well-being.

Now, with my internship (which no one knows about my illnesses), two accelerated grad school classes, and the responsibilities of daily life, I can feel myself reaching the breaking point again. I’m spending about 65-70 hours a week juggling everything. I’m canceling appointments, missing social events, and shutting down any chance of a personal life.

I just recovered from strep throat and COVID, the worst case I’ve ever had. Yet, even when I told my internship, in which I am the therapist, it wasn’t safe for me to drive, they insisted I come in. They did not give me a choice and insinuated that my internship was in jeopardy if I did not show up. The next day, I woke up feeling like I was having a stroke, unable to move, and my sense of smell and taste were gone. I also do not remember being there at all that day, so I couldn't have provided ethical therapy.

When I push myself too much, my body doesn’t just get sick—it becomes a battle with itself. Yet people still think I can handle more. It’s as if the world is demanding more from me, and I just want less. I want peace. I want happiness. I want to be able to enjoy two days in a row where I don’t feel overwhelmed or ill.

Today, as I write this, in April of 2024, I made the decision not to attend an important event for a friend. This is the first time in my life that I put my own needs above someone else’s, and it’s been hard. But I know that if I don’t slow down and take care of myself, I’ll only fall ill again, and that could be anything. When you don’t have an immune system, every little thing becomes a risk. This one decision to prioritize myself, however, seems to have cost me some people in my life, people I’ve dropped everything for over the past five years. But that’s a rant for another post.

Despite everything, I’m growing. I’m giving fewer shits about what others think of me. I’m learning to put myself first without guilt. I’m noticing who notices and who doesn’t. I’ve stopped posting on Facebook. I’m slowly disappearing, and while some might interpret that as a negative, my mental health has never been better. I’m done with the toxicity. Instead of trying to save the world, I’m saving myself, today at least.

I’ve never been more confident that I’m on the right path. I’ve never loved myself until now, and I’ve never enjoyed being alone as much as I do now. But still, the world needs to change how it treats disabled individuals. We have limitations, and we know our bodies better than anyone else. Yet people still make it so difficult for us to advocate for ourselves without feeling like we’re being difficult. The loss of people in our lives for this reason is devastating, but it’s something we learn to accept.

Is anyone surprised I went into social work? :)

In a world that demands conformity

Disabled souls face a harsh reality

Told to push beyond their limits, they strain

Burning out, their efforts made in vain

Different work methods, a plea in the air

But unheard, dismissed with a careless glare

Expected to fit into a mold not meant to be

Ignorance reigns, empathy lost at sea

Capabilities overlooked, misunderstood

A lack of compassion, intentions not good

The assumption that changes are a simple feat

Leads to struggles, hearts heavy with defeat

Addictions and suicides, a tragic toll

The consequences of a world that takes its toll

Pushed to the edge, voices left unheard

In the silence, the pain is stirred

Let us listen, let us learn

Embrace differences, let compassion burn

In the unity of understanding and care

May we build a world where all can share

If you're also living with autoimmune diseases, I feel you, I hear you, and I believe you. Keep fighting!

Me before one of my many surgeries over the past 7 years.