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Hopefully by now y’all know I am one of the nicest people and I genuinely enjoy working with people — especially my care team. Doctors, nurses, specialists, we are all on the same team trying to figure this out together.

But there is one thing I absolutely hate. When someone tells me how I’m feeling. Like, where do you even get off thinking you can tell me what I go through? It’s so infuriating.

But can I get mad? Of course not, because apparently it’s completely irrational for me to be upset you just basically called me an oblivious idiot to the unfortunate occurrences that just so happen to put on a never-ending show of pain, lethargy, cognitive struggles, and that tingling sensation that sometimes feels like a disco ball spinning around my nervous system. You never know where the symptom will pop up next.

Ugh … rant over.

But honestly, that frustration is exactly how many women living with chronic illness become what I like to call “professional patients.” Not because we wanted the job. Because we had to take it.

Learning to advocate for yourself

When you live with conditions such as multiple sclerosis, lupus, or other autoimmune diseases, you quickly learn you cannot be passive about your health. Symptoms change. Bodies change. And sometimes the healthcare system moves slower than your reality.

So you start paying attention. You track symptoms. You remember what medications did — or didn’t — work. You notice patterns doctors might miss because they only see you for 20 minutes every few months. You begin to learn the language of your illness.

Being a professional patient doesn’t mean we think we know more than doctors. It simply means we know our bodies. And when something is off, we speak up.

A different kind of expertise

This shift changes the entire dynamic of healthcare. Instead of sitting quietly and nodding, women living with chronic illness are asking questions, requesting explanations, and making sure their voices are part of the conversation about their treatment.

Doctors bring clinical expertise. Patients bring something just as important: lived experience. And trust me — living in a body that occasionally performs unpredictable neurological gymnastics teaches you a lot.

The power of community

Community also plays a huge role in this transformation. Connecting with other women who understand the daily reality of chronic illness can be life-changing. You swap strategies, compare notes, and remind each other that you’re not crazy when something feels wrong.

Because sometimes the most powerful validation is hearing another woman say: "Yes, that happens to me too."

Owning the Role

At the end of the day, becoming a professional patient isn’t about being difficult. It’s about being informed. It’s about protecting your health. And it’s about making sure that when you say “something isn’t right,” someone actually listens.

Women living with chronic illness didn’t ask for this role. But we’ve learned how to own it.

And honestly? Healthcare is better when patients have a seat at the table.