Undiagnosed but Not Alone – A Place to Land When You're Still Searching

For the past 6 years, I’ve been sick. Really sick.

But for a long time, I didn’t have a diagnosis—just symptoms that wouldn’t go away.

I went from being an active person—teaching full time, raising five kids, volunteering, swimming, dancing, going out—to someone who came home from work and collapsed on the couch, in pain, exhausted, and unable to think.

Then, to not being able to work at all.

Migraines. Fatigue. Brain fog. Pain that moved around. Dizzy spells. And all sorts of other weird symptoms that were hard to explain.

I thought I was just getting sick a lot— cold after cold, flu after flu. But looking back, I wonder if some of those weren’t viruses at all. Maybe they were crashes. My body shutting down after doing too much. I didn’t know enough to call it that then—I just knew I kept getting wiped out, over and over again.

I was exhausted. I was confused. I was done.

I did the rounds—doctor after doctor, test after test. Most things came back “normal.” A few didn’t. But none of it explained what was happening in my body. And without a clear diagnosis, it felt like I wasn’t even allowed to say I was sick.

But I was.

I am.

These days, I have a handful of partial answers - chronic migraines, endometriosis, a nerve issue in my lower spine, fibromyalgia. Some of those feel real and grounded. Others felt more like guesses - diagnoses handed to me in the absence of better explanations.

I’ve also been told (and believe) it probably Myalgic Encephalomyelitis. But also EDS, and/or long COVID. But no one is willing to commit to those answers - until the next specialist sees me. Or maybe the next.

And in the beginning, there was burnout. Anxiety. Depression. Stress. They were presented as the cause of my illness - not as the result of being unwell for so long.

I have more answers than I used to - but none of them feel like the answer. I’m still being sent for tests. I’m still living in the in-between.

Why I Created This Group

When you’re living in this kind of limbo - unable to function like you used to, but still invisible to the medical system and to those around you - it’s lonely.

You may not look sick. Your tests may come back “normal.” But your reality is anything but. And that disconnect - the gap between how bad you feel and how little people understand -can feel like its own kind of suffering.

I created Undiagnosed but Not Alone for the person I used to be - the one stuck in the in-between. The one without answers, constantly having to explain, justify, and somehow prove that something was wrong. I remember how isolating it felt to be unwell and misunderstood - not just by doctors, but by people close to me who couldn’t quite understand why I wasn’t myself anymore. I still feel that way sometimes.

I remember attending my very first online support group. It was a Zoom meeting for people living with ME/CFS and fibromyalgia. I didn’t have a formal diagnosis, but I decided to show up anyway. When the other participants appeared on screen, I cried - because for the first time, I saw people who looked and sounded as sick and tired as I felt. That group was a godsend. But even as it helped me, I often felt like an outsider, wondering if I really belonged. I didn’t have the label. I didn’t have the certainty. And I kept thinking - if not here, then where?

This group is my answer to that question. It’s the space I wish I had back then -a place where you don’t have to explain, where being sick without a name is enough.

What You’ll Find (and Not Find)

In the group, you’ll find:

• People who understand what you’re going through

• Gentle conversations, low-stress check-ins, and a lot of compassion

• A few memes, a few deep thoughts, and hopefully a few laughs when we need them most

  
  

You won’t find:

• Toxic positivity

• Pressure to share or explain yourself

• One-size-fits-all advice

  
  

You don’t need to have a diagnosis or look a certain way to belong here. If your body is making everyday life harder than it should be, if you're carrying the weight of symptoms no one else can see - this space is for you.

If Facebook Isn’t Your Thing

I get it - sometimes social media just isn’t the right place. If that’s the case, you can still connect:

• Join a Zoom hangout (coming soon): I’m planning some low-key meetups for folks who just want to be around others who get it. Keep checking back here for a schedule.

• Subscribe to this blog for updates and to read about my personal journey.

  
  
  
  

You’re Not Alone

If no one’s told you this today:

You are not imagining things. You are not being dramatic.

You are just sick - and that’s real, whether there’s a name for it yet or not.

I hope this group gives you what I needed most when I was searching:

Proof that I wasn’t the only one.

To join - Click the link below or Search for us on Facebook - Undiagnosed but Not Alone!

Join Undiagnosed but Not Alone on Facebook