Emily’s Story: Sharing Life with Addison’s Online

Meet Emily, a 24-year-old content creator from the Lake District, creating lifestyle, fashion and everyday moments inspired by where she lives. Alongside her love of the outdoors, she also opens up about her personal journey with Addison's disease.

For Emily, advocacy is more than awareness, it’s about making our “invisible” health condition seen and understood. She shows that sharing your story, however vulnerable, can make a difference for so many others.

My Diagnosis 

Looking back now, I can see the signs were there long before anyone had answers, but at the time it just felt like I was slowly losing myself without understanding why.

I was ill for around three years before I was diagnosed, with the earliest signs starting when I was about 12 years old. It began in ways that were easy to brush off. I was being sick every morning before school, over and over again, to the point where it just became part of my routine. I’d wake up already dreading how I was going to feel. I also noticed strange brown marks appearing on my skin whenever I scratched it. No one really questioned it and I didn’t know it meant anything either.

But things didn’t stay small.

As time went on, it felt like my body was slowly shutting down, bit by bit. I was constantly being sick and could barely eat anything apart from Quavers. Even the thought of most foods made me feel worse. I started craving icy water constantly, which at the time felt random, but now I understand it was my body trying to tell me something was seriously wrong.

I became so short of breath that even small things felt exhausting. My body felt weak and heavy, like I was carrying something I couldn’t put down. Right before I was admitted to hospital, everything got worse very quickly. In the space of 10 days, I unintentionally lost a stone and a half. I didn’t recognise myself anymore. I didn’t feel like myself either. It got to the point where I couldn’t even stand up for more than a minute. Imagine being 15 years old and not having the strength to stay on your feet. Everything felt like too much.

December 2017 is when everything finally came to a head. I went into hospital on the 18th, right in the middle of my mock exams. At that point, I think part of me knew something wasn’t right, but I didn’t realise just how serious it was. Over the next few days, I stayed in hospital while they ran what felt like endless tests. Blood tests, monitoring, questions, trying to figure out what was going on. I was there for four days in total, waiting for answers without really knowing what they were looking for. I was diagnosed on the 20th with Addison’s disease.

In a strange way, there was relief in finally having an answer. After years of feeling unwell and not knowing why, it gave everything a name. But at the same time, everything changed. I went from not knowing what was wrong, to being told I had a lifelong condition that I would have to manage every single day.

On the 22nd, I travelled to Newcastle to see specialist endocrinologist Dr Tim Cheetham. That appointment was overwhelming but also grounding. It was the first time I felt like I had some sort of control again. I was shown how to manage my condition, what I needed to do to stay safe and how to start rebuilding.

And somehow, just a few days later, I was back home for Christmas. It felt surreal, like everything had happened so quickly but also like it had been building for years.

Even after being diagnosed, it didn’t suddenly get easier. If anything, it was the beginning of a completely new way of living. It took me years to really understand my body again, to trust it and to learn how to listen to what it was trying to tell me.

Life After Diagnosis

Life after being diagnosed with Addison’s isn’t something you just adjust to overnight. It’s something you learn slowly, sometimes through trial and error and sometimes the hard way. For me, it became about learning how to live with my body instead of feeling like I was constantly fighting against it.

The basics matter more than anything. Taking my medication on time isn’t optional, it’s essential. Even being a few hours late can completely change how I feel. It’s always there in the background, something I have to be aware of no matter what I’m doing.

Diet has also played a huge role in how I feel day to day. Around a year after being diagnosed, I really started focusing on what I was eating and it made such a difference. It helped with pain, energy levels and just feeling more like myself again.

Movement is something I’ve grown to really value too. I go to the gym, I love hiking and even just getting outside for a walk can completely shift how I feel. It’s not about pushing myself too far, it’s about supporting my body in the right way and learning what works for me.

Advice on exercise & adrenal insufficiency

But more than anything, it’s the mental side that changes you. You learn to check in with yourself constantly. You learn that you cannot always push through things the way you may have before, and that’s not weakness, it’s awareness. It’s understanding your limits and respecting them.

One of the biggest misconceptions I come across is people thinking Addison’s is, “just being tired.” Fatigue is definitely part of it, but Addison’s affects your entire body and can become life-threatening. Because it’s an 'invisible illness', people often assume you’re completely fine because you “look healthy,” but there’s so much happening behind the scenes that people don’t see. Some days are easier than others.

Some days your body reminds you very clearly that Addison’s is still there. But over time, you learn how to respond to that instead of ignoring it. It becomes a balance. One that takes time, patience and a lot of self-understanding.

Why I Started Sharing My Story

When I was first diagnosed, I felt really lost. There wasn’t much out there and a lot of what I know now I had to figure out myself over time. It can feel incredibly isolating when you don’t fully understand what’s happening to your own body.

As time went on, I realised how much I’d grown from the experience, not just physically but mentally as well. That’s what made me want to start sharing my experience online.

I’ve always loved creating content around fashion, the outdoors, hiking, lifestyle and everyday moments, but over time I realised my health was a huge part of my life too. I didn’t want Addison’s to be something hidden away, because it impacts so much behind the scenes.

Sharing my story online became my way of turning awareness into action.

One of the biggest things I’ve learned from sharing my experiences online is how many people are silently struggling. Some of the messages I receive are from people living with Addison’s or other chronic illnesses, while others are still searching for answers themselves. A lot of people say they feel understood or less alone after seeing someone speak openly about it, and that’s probably the most meaningful part of all of this for me.

Reducing the stress of a long-term condition

I’m also quite intentional with what I choose to share online. I never want my content to feel completely centred around illness because Addison’s is only one part of who I am. I still love creating content around fashion, hiking, farm life, travelling and everyday routines but I also think it’s important to show the reality behind the highlights sometimes too.

Content Creation & Living with Addison’s

Content creation has become such a creative outlet for me. An average day can involve filming videos outdoors, editing content, going on hikes in the Lake District, creating fashion and lifestyle posts or simply documenting slower everyday moments. No two days really look the same, which is something I love.

Living with Addison’s has definitely changed the way I approach all of it though. I’ve had to become much more aware of my energy levels, stress, sleep and routine. Planning ahead is really important, especially for long filming days, travelling or spending long periods outdoors. Some days I can do a lot and other days my body reminds me to slow down. 

One thing Addison’s has taught me is that rest is productive too. I used to feel guilty slowing down, but now I understand that looking after myself is part of being able to continue doing the things I love.

To anyone wanting to share their experiences online, I’d say do it in a way that feels comfortable and authentic to you. You don’t have to share everything to make an impact. Even speaking honestly about small parts of your experience can help someone else feel seen, understood or less alone.

What Living with Addison’s Has Taught Me

Living with Addison’s has taught me a lot, especially about myself. Not everyone is going to understand what you’re going through and that’s okay. In a way, you wouldn’t want them to, because it means they haven’t had to experience it themselves.

I’ve learned how important it is to listen to my body, to actually pay attention to what it’s telling me instead of constantly pushing past it. Your mind and body aren’t separate - they work together and when one is struggling, the other feels it too.

Rest is something I’ve had to learn, not just physically but mentally as well. Learning to rest without guilt is still something I’m working on, because it doesn’t come naturally, but it’s so important. Living with Addison’s isn’t always 'visible', but it is always there. It’s something I carry with me every day in how I think, how I plan and how I look after myself.

Sharing my story is my way of turning awareness into action. Because the more we talk about Addison’s, the more people understand it and the more supported those living with it will feel. If this helps even one person feel less alone or encourages someone to listen to their body and push for answers, then that’s exactly why I wanted to share my story.

We ask Emily our most asked "Addison's Admin" questions here at ADSHG!

How do you remember to take your tablets? 

Managing Addison’s has become part of my everyday routine now. I use alarms on my phone to remember my medication and always make sure I carry spare tablets with me wherever I go, because consistency is so important when managing Addison’s disease.

How do you carry your injection kit? 

I carry my emergency injection kit with me, especially when travelling, hiking or spending long days away from home. Having it with me brings reassurance and allows me to feel more confident doing the things I enjoy.

What type of medical alert identification do you have? 

I use medical identification and keep emergency medical information on my phone as well. I think medical ID is incredibly important because it can speak for you in situations where you may not be able to explain your condition yourself.

Emily Mann

Follow Emily on Instagram @notemilymann

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