About Me

Hi, and welcome. I’m glad you’re here.

More than twenty years ago, I was diagnosed with an autoimmune condition. That diagnosis set me on a path I never expected. One that eventually led to this website.

After my diagnosis, I began experiencing additional symptoms that raised questions about whether something else might also be going on. One of them was persistent redness across certain areas of my face. It looked a lot like the butterfly-shaped rash associated with lupus. There were other symptoms too. Things that didn’t quite fit the diagnosis I already had.

So I did what I’ve always done when I don’t understand something.

I started researching.

I wanted to understand lupus. How it could relate to other autoimmune conditions. What the symptoms could look like. What the science could tell me.

And I found a lot.

Some of it answered questions I’d been asking myself. Some of it surprised me. And some of it made me think: other people looking for answers should be able to find this too.

The more I learned, the more I came across information that felt worth sharing. Not because I had all the answers. Because I suspected other people were asking many of the same questions.

That research eventually grew into Lupus Self Help.

Why I Created This Website

I originally created Lupus Self Help as a resource for people looking for information about lupus. People trying to understand a complicated, sometimes debilitating autoimmune disease while navigating much of the experience on their own.

As I kept researching and sharing, something unexpected happened.

People outside the lupus community began finding us.

They were living with other autoimmune diseases. Chronic illnesses. Rare diseases. Invisible illnesses. Chronic pain. Their diagnoses were different, but so many of the experiences they described were remarkably familiar.

Fatigue that other people couldn’t see.

Plans that changed at the last minute.

Uncertainty about symptoms.

The frustration of looking perfectly fine while feeling anything but fine.

And maybe most of all, the experience of not always feeling understood by the people around them.

The community grew into something bigger than lupus.

People found emotional support and understanding from others who got it. People who were often walking a surprisingly similar path, even when the name of their condition was different.

So Lupus Self Help evolved with them.

Lupus remains at the heart of this website. But today the conversations here extend into the broader realities of living with autoimmune disease, chronic illness, invisible illness, rare disease, and chronic pain.

What Happened With My Own Questions

Eventually, I was tested for lupus.

The key tests at the time, including ANA antibodies, came back negative. I was not diagnosed with lupus.

I want to be clear about that.

I don’t have lupus, and I don’t write as though I do.

Lupus is still something I keep on my radar because of my autoimmune history and the symptoms that originally led me to investigate it. If something changes in the future, it’s something I know I may need to revisit with my doctors.

And my interest in understanding lupus certainly didn’t disappear when my tests came back negative.

Quite the opposite.

I kept learning. And I keep sharing what I find here.

More Than Medical Information

There’s an enormous amount of medical information available online.

But having access to information and actually making sense of what you’re experiencing aren’t always the same thing.

I learned that through my own experience with autoimmune disease.

You can know the name of a condition and still have countless questions.

You can understand what a symptom is and still struggle with what it means for everyday life.

Sometimes what you need isn’t another clinical definition. You need someone to explore the question a little further. Help connect a few dots.

That’s what I hope Lupus Self Help can do.

What You’ll Find Here

I research subjects I find important, interesting, useful, or sometimes simply overlooked. And I share what I discover.

Some articles are more medical and informational. Lupus symptoms, treatments, research, nutrition, infections, fatigue. The practical concerns.

Others explore the human side of chronic illness. The exhaustion other people don’t see. Uncertainty about symptoms. Changing plans. Feeling misunderstood. Worrying about what might happen next. All the things that can accompany life with a condition that isn’t always predictable.

Over time, I’ve also become deeply interested in something else.

The extra weight we can carry on top of an already difficult physical experience.

I’m not talking about another list of things you need to do. And I’m certainly not suggesting that illness is all in your head.

I’m just interested in a simple question.

Is there anything we can understand that might make an already difficult experience a little less difficult to live with?

My Approach

I’m not your doctor.

I’m not your coach.

I’m someone who’s lived with autoimmune disease for more than twenty years and still believes there’s always more to understand.

What I bring here is more than two decades of personal experience living with autoimmune disease, years of researching health and wellbeing, and a genuine curiosity about why we experience the things we do.

I try to respect both scientific evidence and the realities people describe about living with chronic illness.

I don’t believe in miracle cures.

I don’t believe people struggling with chronic illness need another person telling them to try harder, or think more positively, or follow an endless list of wellness rules.

And I don’t believe hope requires minimizing how difficult illness can sometimes be.

I just want Lupus Self Help to be a place for useful information, thoughtful exploration, new discoveries, and different perspectives.

Let’s learn together and support each other.

Why I Keep Sharing

Researching something because you need an answer for yourself is one thing.

Discovering that what you’ve learned might help someone else gives that research another purpose.

When I find information that helps explain something confusing, research worth knowing about, an idea that changes the way I understand an experience, or a perspective that makes something feel a little lighter, I want to share it.

I don’t have all the answers.

But sometimes one useful piece of information, or one new way of seeing something you’ve been struggling with, can make a surprising difference.

I hope some of the things I discover and share here can do that for you.

And if you’re navigating lupus, autoimmune disease, chronic illness, invisible illness, rare disease, or chronic pain, I hope Lupus Self Help feels like a useful and supportive place to have beside you along the way.