How AI Helps Me Manage Complex Autoimmune Diseases

If you live with systemic sclerosis and dermatomyositis overlap, you already know what it means to manage a disease that affects multiple organ systems at once - skin, muscles, circulation, gastrointestinal tract, and more. You also know what it means to carry a mountain of information: lab results, imaging reports, medication lists, and specialist visit notes.

You may have wondered, “How do I make sense of all of this? How do I manage skin changes, GI symptoms, infections, medications, and fatigue, while still trying to live a life?”

For a long time, all of that information felt overwhelming and fragmented to me. I was working full-time, seeing multiple doctors, receiving complex test results, and trying to understand how it all fit together, while also coping with fatigue, pain, and brain fog. It often felt like no one was looking at the complete picture.

One of the tools that has helped me regain a sense of control is artificial intelligence (AI). I don’t use AI to replace my doctors. I use it to help me understand, organize, and advocate more effectively within my care, and to feel less lost in the process.

Here are three practical ways I use AI as part of my health journey.

1. Understanding Test Results

When you live with a rare, systemic disease, lab work and imaging can be difficult to interpret. Results often come back filled with medical terminology and numbers that are hard to place in context.

I use AI to:

· help me translate lab reports into plain language

· understand what certain markers relate to

· explore how results might connect to symptoms I’m experiencing

This helps me prepare for appointments by knowing what questions to ask. Instead of walking in confused or anxious, I can say, “I noticed this value changed, what does that mean for my treatment plan?” It doesn’t replace professional interpretation, but it helps me be a more informed and engaged participant in my own care.

2. Checking Medication Interactions and Trade-Offs

With systemic autoimmune disease, treatment often involves immunosuppressive medications, antibiotics, and symptom-management drugs. At times, I have been on more than 20 medications a day.

AI helps me:

· understand potential drug interactions

· learn why certain medications cannot be taken together

· recognize when symptoms may be side effects rather than disease progression

This has been especially important when infections interrupt my immunosuppressive treatment.

Being able to understand the risks and benefits allows me to have more meaningful conversations with my doctors about timing, safety, and alternatives. Using AI this way has helped me feel less powerless and more prepared when navigating difficult treatment decisions. Never make a medication change without consulting with the prescribing physician.

3. Summarizing and Organizing Doctor Visit Notes

One of the hardest parts of chronic illness is keeping track of what each doctor says, especially when you are seeing multiple specialists.

I use AI to:

· summarize long appointment notes

· pull out key action items

· organize timelines of symptoms and treatments

· identify patterns across specialties

This has helped me recognize connections between skin changes, gastrointestinal symptoms, infections, and medication effects. Connections that are easy to miss when care is fragmented. It has also helped me communicate more clearly between providers, which is essential when managing a systemic disease.

AI as an Empowerment Tool, Not a Replacement for Care

I want to be very clear: I do not use AI instead of doctors. I use it because I have doctors. I use it to better understand what is happening in my body, to organize the information I’m given, and to walk into appointments prepared instead of overwhelmed.

Living with a systemic disease often means carrying the responsibility of coordination yourself. AI has helped me make sense of complex information, recognize patterns across specialties, and communicate more clearly with my care team. It has not taken decisions out of my doctors’ hands; it has helped me participate more meaningfully in those decisions.

For me, empowerment does not mean doing this alone. It means having tools that help me feel informed, confident, and heard. AI has become one of those tools. Not to replace medical care, but to support it.

My hope is that as technology continues to evolve, it will be used responsibly to help patients recognize patterns earlier, improve communication between providers, and reduce the long road many of us face before diagnosis. Until then, I will continue using it as one of the ways I advocate for myself and others living with systemic sclerosis. 

“Empowerment is not about having all the answers. It is about having the tools to ask better questions, and the support to be taken seriously.”

Protecting Your Privacy When Using AI such as ChatGPT, Copilot, Meta AI, Gemini, etc.

· Set up your AI account using a ‘junk email address’ vs. an email that is your name.

· Do not log in using accounts connected to your identity, such as Facebook/Google/etc.

· Cut and paste text from reports vs. uploading the report as a .pdf

· Remove direct identifiers such as your full name, address, phone number, email, date of birth, Social Security number, medical record numbers, and account numbers.

· Generalize sensitive details whenever possible (for example, use age range instead of exact age, or city instead of full address).

About the Author

Shannon Montgomery is a patient advocate living with systemic sclerosis and dermatomyositis overlap who uses her experience navigating complex care to promote patient empowerment and earlier disease recognition.