Mauve's Story: My Addison's Journey

In the spring of 2023, Mauve was diagnosed with Addison's disease (primary adrenal insufficiency) at the age of 29. By trade, Mauve is a painter, living in the USA, who uses painting as a means to story tell and encapsulate memories onto canvas. Mauve cares deeply for the Addison’s community and believes sharing our stories with the disease is one of the best ways we can advocate and push for better medical treatment and management of the illness.

Here she shares her story with the ADSHG community - thank you so much Mauve for speaking with us. Mauve continues to advocate for greater awareness, courageously and transparently sharing both the highs and lows of living with Addison’s by speaking in podcasts, such as the brilliant Addison's Advocate Podcast and Pickle Jar Podcast. Read to the end to watch or listen to these conversations.

My Diagnosis

In the spring of 2023 at 29 years old, I found myself staring back on a Zoom call unable to speak. My words that were moments before well articulated, were now sounding jumbled, slurred, and incoherent. I ended the call and knew I needed to head to the emergency room.

By the time I got to the hospital, I could no longer lift my arms. Code stroke was called and I was rushed back for scans, tests, and lab work. Initial results showed I was not having a stroke, but doctors began talking about my sodium being fatal-levels low, matched with a concerningly low blood pressure. The puzzle to figure out what was going on in my body would be solved 4 days later when I was formally diagnosed with Addison's disease (primary adrenal insufficiency).

Initial Life Post Diagnosis

In the months following my diagnosis, I went through grief. I mourned the loss of my old body, my prior conceptions of the medical system, and the life I had thought would be my future. But in this hurt, a fire was lit. I wanted to be alive. I wanted to live.

I went on a mission to learn. I connected with members of the Addison’s community via social media, Reddit, Zoom, The Pickle Jar Podcast, and sites like the Addison's Disease Self-Help Group, although I'm based in Seattle, USA. I spent countless hours learning from blog posts, medical journals, and medical professionals so I too could become an expert on this illness. I knew this information and support would be my key to living the life I so desperately was fighting for.

Life now

As a creative, Addison’s has only fueled my passion for painting. I know that life is a gift and I intend to use every last drop doing the things I love most. For me, life takes new meaning when I am out in the yard with the dogs and a paintbrush in hand. I know taking care of my body by ensuring I take my steroids daily and on time permits me access to those things I hold most dear.

How do you remember to take your tablets?

"My steroids are my life force. If I want to live, it is my responsibility to give my body what it needs so I can do the things I want to do."

With that, I keep my pills on my nightstand so they are the first thing I see in the morning. I carry my afternoon dose in my purse so no matter where I am, I know they are on me and ready for the taking. I don’t leave my house without my keys, wallet or phone, so it isn’t any different with my medication.

How do you carry your injection kit?

I bring my injection kit everywhere. I purchased a hard shell medical case online via Amazon that is small enough I can toss in my tote bag. Inside the medical case, I also printed off the injection directions and emergency treatment info found here on the Addison’s Disease Self-Help page. Having this on me at all times has alleviated worry and there is great peace of mind in knowing it is there when and if I need it.

Instructions for your injection kit

What type of medical alert identification do you have?

I wear a gold, medical alert ID bracelet that I ordered online. It has clear and explicit directions on what to do in case of an emergency. On the front is my name, Addison's Disease, Steroid Dependent, and 100 mg Solu-Cortef ICE. On the back, it says “Inject immediately with 100 mg Solu-Cortef if injured or unconscious- time sensitive!”

Learn about medic alert ID

How has Addison’s changed your life?

Addison's is not a death sentence, but it does require that I play by a new set of rules from a different playbook than I was once used to. I have to think about my day, how I expend my energy, and pay close attention to the signs of my body at all times - as we still go without medical devices, such as Diabetes with glucose monitors, that would allow us to check in on cortisol and sodium levels.

I cannot push through feeling off. I am the manager to my body and it is my primary job to make sure I heed the warnings so I can in return live a full life. Sometimes saying no to something now means I can say yes to something else later on. This is a delicate balancing act acquired only through time and lived experience.

What advice would you give someone newly diagnosed?

If you are newly diagnosed, just know that my heart is with you. I have been where you are right now. I encourage you to learn as much as you can about this disease, to connect with those who live it, and to advocate for your body with your medical team. Inform the people around you so they too can gain an understanding and provide support in the times you need it.

Share your story and reclaim the parts of yourself that a diagnosis can at times take away. Trust that you will always be your strongest advocate, the person who knows your body the best, and do not give up on fighting for the life you deserve to experience. All of these efforts accumulate over time. We are stronger because of it.

 Author: Mauve

Looking for more support? Check out the ADSHG resources below:

  • Get prepared! Mauve shows knowledge is power. Learn about the emergency injection, medical ID and more.
  • Read our publications, Living with Addison's book and become an expert patient. No printer? No problem! Visit our online shop for printed copies of our publications and leaflets.
  • If you're a young person, visit our young persons page, for more information and resources relevant to your age group.
  • Having a chronic health condition can be exhausting and overwhelming. On our 'Reducing the Stress of a Long Term Condition' page, we discuss how to balance life, emotional health and Addison's and adrenal insufficiency.
  • Some people find it helpful to speak to someone who understands what it is like to live with Addison’s and adrenal insufficiency. Our online community is a welcoming place for everyone affected by Addison’s and adrenal insufficiency to ask questions, read about people’s experiences and support each other.
  • Whether you're newly diagnosed or have lived with the condition for years - join our community and support our cause! You'll receive the latest expert advice, guidance and ADSHG news, whilst being part of our inspiring and supportive community.
  • Want to share your story? Get in touch. 

Whether you're newly diagnosed or have lived with the condition for years - please join our community and support our cause! You'll receive the latest expert advice, guidance and ADSHG news, whilst being part of our inspiring and supportive community. Become a member today! 

Join the ADSHG 

Connect on social media! Follow us on X/Twitter, Bluesky, Facebook, Instagram, LinkedIn, Threads, TikTok and YouTube. 

Manage Cookie Preferences