Multi conditions: “My voice is loud for those who have been silenced.”

Hi Lacie,

Thank you for agreeing to tell your story to the Carenity audience.

First of all, could you tell us more about yourself?

Hi, I’m Lacie LaJoie! I am a mental health and disability advocate from Arkansas. Aside from my illness— I am also a baker and a business owner. I graduated from university with a degree in Education, and I am a dog mom to a 3-year-old lab-mix named Ella!

What conditions do you live with? What were/are your symptoms?

• Congenital bilateral Optic Nerve Hypoplasia
• Postural Orthostatic Tachycardia Syndrome
• Mast Cell Activation
• Gastroesophageal Reflux Disease
• Hypertension
• Syncope
• Mental Disorder

(Plus a few suspected conditions, I am still awaiting diagnoses.)

Some symptoms include: Tachycardia, blood pressure fluctuations, syncope, dyspnea (shortness of breath), heart palpitations, temperature dysregulation, chest pains, fatigue, blood pooling, mock stroke (mimics a stroke).

How long did it take to be diagnosed? How many doctors did you see? What tests did you have to go through?

Aside from Optic Nerve Hypoplasia, which I was diagnosed with at birth, each diagnosis took different amounts of time. Overall, each diagnosis was diagnosed within about two years of seeking help. In the duration of diagnosis discovery, I have seen approximately 15 doctors (cardiologists, endocrinologists, hospitalists, gastroenterologists, ophthalmologists, radiologists, gynecologists, specialists, and primaries.)

How did you feel when you were diagnosed? Did you understand? Were you able to receive all the information you needed to understand the condition?

Since I grew up with symptoms throughout my whole life, I was less surprised to know that there was were underlying causes— but being told that there was no cure to my illness(es) brought on a wide range of emotions. It took a magnitude of research to have an understanding of what is going on with my body, and even now, I don’t fully grasp it.

What is your current health management regime? What do you think about it? What are your treatments? Are you satisfied?

Rest is vital for me to maintain my life and lifestyle. I go through many treatments including various medications and the occasional IV infusion. Overall, my treatments fluctuate depending on wellness, day-to-day!

What is or has been the impact of your condition on your professional and social life? What do you think is the most bothersome part of your daily life living with your conditions?

Illnesses have completely bombarded the life that I had planned for myself. I earned a degree in Education, but I am unable to pursue it as a career due to the state of my health. The most bothersome part of my daily life would include any and all activities that happen during the morning hours due to my body's fluctuations. Heat is a huge problem with my condition, so trying to regulate my body’s temperature is also very tricky!

When did you start sharing your story on social media? What has the response been?

I started sharing my story on social media in October of 2022. The response has been life-changing— I have engaged with some of the most down-to-earth, understanding, accepting, and loving people within the chronic community.

What message do you want to tell the other Carenity members? What is your advice?

You deserve a safe space to be vulnerable about the reality of illness. The fight feels less heavy when others are there to help carry you through. You are heard. You are seen. You are understood. You are valid.

 Any last thoughts to share?

“My voice is loud for those who have been silenced.”

 A big thank you to Lacie for this interview! 

Did you find this story helpful?  

Click Like and share your thoughts and questions with the community in the comments below!  

Take care of yourself!