For years, I was treating the symptoms without knowing what was causing them.

RECENTLY DIAGNOSED

“Sofia” is a pseudonym. Her story is real and shared with her permission.

I’ve had symptoms since I was a teenager. The difficult thing was that there always seemed to be another explanation for them.

I saw doctors regularly and I received treatment, so I wouldn’t say I was ignored. Often, the treatments helped. But they were treating individual symptoms rather than helping me understand why they were happening.

For years, I was managing the pieces without understanding how they fitted together.

I had treatment. What I didn’t have was an answer.

My skin was one problem. Tiredness was another. Feeling cold was just something I lived with. There were sensitivities and other symptoms that came and went.

Because treatments often kept things relatively under control, it wasn’t always obvious that we might be missing something bigger.

I kept seeing doctors and trying to find answers. It took a lot of different appointments before I eventually found people who were willing to look more deeply at what was happening.

The hardest part wasn’t that nobody was treating me. It was that I never seemed to have the complete answer.

The breakthrough came from somewhere I didn’t expect

I’d been seeing a dermatologist for years for my skin without knowing I had psoriasis.

Eventually, I had a bad reaction after starting a treatment. My skin became red, I developed hives after eating certain foods and I wondered whether I might have food allergies.

That took me to a gastroenterologist.

He looked at everything I was experiencing and asked me a question nobody had asked before:

“Have you ever been diagnosed with psoriasis?”

I hadn’t.

It was an unexpected route to an answer, but once I had a name for what was happening, I could find the right specialist and start understanding my health differently.

Then my mum’s experience helped another piece fall into place

Hashimoto’s happened in a similar way.

My mum had experienced thyroid problems for much of her life without knowing that the cause was autoimmune. When she was eventually diagnosed with Hashimoto’s, she was told that her children should consider being tested too.

Suddenly, my own symptoms made more sense.

I’d experienced them for years, but it was only when we could look at my mum’s experience alongside mine that things started to connect.

Without knowing my mum’s health history, I think it would have taken me much longer to get the right diagnosis.

A diagnosis helped. It didn’t make everything disappear.

I’m now on treatment for Hashimoto’s and have a much better understanding of what I’m dealing with.

But managing my health is still part of everyday life.

I get tired and often need to nap. I’m almost always cold. My skin can flare, and I’ve learned to pay close attention to things like nutrition because I’ve noticed changes can be followed by changes in my symptoms.

None of these things necessarily sounds huge on its own.

It’s the combination that people don’t always see.

There are medications, skincare, nutrition, exercise, appointments and the mental effort of constantly paying attention to how you’re feeling. Over time, it all adds up.

Looking after my mental health changed things too

One of the biggest things that has helped me isn’t something I originally associated with managing an autoimmune condition.

It’s therapy.

I’ve been seeing the same therapist for several years. We talk about many things, but a significant part of it is managing the stress and anxiety that can come with my symptoms.

I’ve also found mindfulness and meditation really helpful.

They haven’t just helped me deal with the emotional side of my health. They’ve helped me become more attuned to my body and more motivated to understand what is happening.

Looking after my mental health has become part of looking after my physical health.

I know my body incredibly well now

After living with symptoms for so long, I’ve become very sensitive to small changes in how I feel.

I track my nutrition. I track activity. I keep a journal of my symptoms.

The frustrating part is that all that information lives in different places.

I don’t just want to know how much protein I ate or how many steps I took. I want to understand what happened afterwards.

Did something I changed coincide with a flare? Was I more exhausted the next day? Is there a pattern that I’m missing?

At the moment, I have to try to make those connections myself.

I don’t need more disconnected information. I want to see the bigger picture.

I wish I’d had that bigger picture sooner

Today, I finally feel that I have the right information and the right people around me.

What stays with me is how long it took to get here.

My symptoms had been present for years. I was seeing doctors. I was receiving treatments. But it took different people noticing different clues before those pieces finally began to come together.

My mum’s experience helped me. Conversations with other people helped me. Information I found online helped me ask better questions.

That’s one reason I’m comfortable sharing my story now.

If talking about what I’ve experienced helps someone else connect their own dots a little sooner, then it’s worth it.

A note from mOI
If Sofia’s story feels familiar
Sofia shared her story with us before mOI was available. Her experience helped reinforce why bringing symptoms, health history and results together matters. mOI is designed to help you build a clearer picture over time and have better-informed conversations about your health.
Start connecting the dots  →

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Name changed to protect the participant’s privacy. This story is based on a real interview and is shared with permission. Some details have been omitted to preserve anonymity. Interviewed by Carol Sun-Schuster and Raquel de Aymerich for mOI.