The month of July is Disability Pride Month! This is a month about celebrating differences and learning more about each other. This month we talk with Lacie who is a chronic illness and disability advocate, read on below to learn more about her!

Hello Lacie! It is awesome to talk with you today. Could you please tell us a little about yourself?

I am chronically ill + disabled + blind. I am from the Southern United States. My family is small and consists of my fiancé and our sweet doggie, Ella. I am an aunt to two little boys, a sister of two siblings (I am the middle-child) and I was adopted by my grandmother at the age of nine. My hobbies include baking, coffee making, and anything that allows me to be a homebody! Aside from my chronic illness, I have a bakery business that was established in 2022 called Lacie’s Loft. 

Do you have a diagnosis for your symptoms? If you have a diagnosis, can you tell us what it is and describe what that means for you? 

I was born with Bilateral Optic Nerve Hypoplasia, meaning I am blind in both eyes. I am also diagnosed with Dysautonomia (POTS) and the comorbidities that follows that diagnosis, such as arrhythmia, IST, MCAS, etc. 

Does having a diagnosis help you? 

When I was without a diagnosis, there was a plethora of dismissals. “It’s just puberty….It’s just hormones.… It’s just mental health” which only put me more at risk in the long run. 

How long did it take for you to get a diagnosis? 

My blindness diagnosis happened right after birth, but it took my entire childhood + teenage years, until early adulthood to be diagnosed with POTS and the following chronic illness comorbidities. 

When did you first realize that you had chronic illness and how has your journey been since then? 

We, my grandmother and I, knew I had been sick for a huge portion of my life, but could never pin-point “how” or “why.” I have had so many experiences that I now look back on that are so obvious that something was wrong. 

How has your experiences of the world changed since your symptoms started? 

Chronic illness changed my life in a paradoxical manner. It has been so hard, debilitating, and exhausting. I honestly didn’t know if I was going to be able to keep on living like this. Having online support helped uplift that feeling of despair. I have now interacted with thousands in the chronic illness community that have changed my life for the better. Although it’s still so incredibly hard, and I would do anything to change my outcome, being able to be an advocate has uplifted my life in indescribable ways.  

Which of your symptoms do you find the most debilitating and why? 

My most debilitating symptoms are: fatigue, tachycardia, adrenaline dumps, syncopal episodes, and temperature dysregulation. I experience these symptoms every single day and they never get easier. 

Syncopal episodes (both pre-syncope + syncope, itself) is presented with near-fainting and/or fainting. When this happens, I lose my ability to hear, see, and speak. Syncope episodes can take either seconds or minutes for me to regain consciousness— and after an episode, I feel really warm, sweaty, tingly, thirsty, confused, and have tremors. When this happens, it is best for me to stay laying down, elevate my legs, and replenish with electrolytes. It may take several hours for me to feel good enough to stand up. These episodes are scary, especially when out in public and/or alone. The summer heat amplifies my episodes. 

Can you describe what a bad day symptom-wise looks like to you? 

A bad symptom day consists of me being wrapped up in a blanket on my couch, snuggling with fur-companion, Ella. I always have a fan blowing towards me. There will be a comfort show turned on the TV, plus snacks + water bottles in arms reach. 

What has been the most helpful for you as you have gone through this journey? 

The most helpful part of my chronic illness journey has been interacting with others that truly understand what I am going through with overall love and support. 

Is there anything you would like people to know about your chronic illness or chronic illness in general?

If I could teach others about my condition(s) I would mainly focus on the reality of Dysautonomia (POTS.) It is a debilitating illness that consumes the entire body, with a wide range of symptoms. I would also want others to know about Optic Nerve Hypoplasia, the cause of my blindness. Blindness ≠ Blackness. Just because someone is blind does not mean that they only see nothingness. Only a very small percentage of those in the world who are blind see total “nothingness.” Blindness is simply a spectrum. 

Thank you Lacie! 

You can find Lacie on Instagram @lacielajoie and find her bakery business on Facebook at Lacie’s Loft – Homemade Baked Goods. Lacie has a home based bakery called Lacie’s Loft. She is a self-taught baker and established her bakery in 2022. There are 20+ cake and cupcake flavors to choose from on the menu!