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Being Part Of The Chronic Conversation!

Chronic Illness + Disability Advocate.

Hi, I'm Lacie LaJoie (Luh-Joy.)

I am chronically ill, disabled, and bilaterally blind. I was born with Optic Nerve Hypoplasia (ONH), which is a rare condition that results in blindness, as well as other health complications- such as adrenal crisis. I am diagnosed with Dysautonomia (POTS), Hypertension, GERD, and comorbidities that follow (arrhythmia, MCAS, etc.) As well as mental health disorders (OCD, anxiety, depression, etc.)

I have spent my entire life since birth with disabilities, but it wasn't until 2022 that I really opened up about my realities and felt free of shame, embarrassment, and fear.

If I could teach others about my condition, I would mainly focus on the reality of Dysautonomia. It is a debilitating illness that consumes the entire body, with a wide range of symptoms. You can find more information at Dysautonomia.org! I would also want others to be educated about Optic Nerve Hypoplasia.

For example, blindness ≠ blackness.

Blindness is simply a spectrum, meaning just because someone is blind doesn't mean that they only see "nothingness." Only a small percentage of those who are blind experience or "see" total nothingness. As for myself, I experience nothingness in my left eye, and only central without peripheral vision in my right eye.

Overall, chronic illness changed my life in a paradoxical manner. It is hard, debilitating, and exhausting. I truly did not know if I would ever survive living with the challenges I faced. Having online support has helped shift that feeling of despair. I have now interacted with thousands in the chronic illness community through my Instagram (@lacielajoie) and continue to connect with people daily. Although it's incredibly hard, and I would do anything to change my outcome, being able to be an advocate for myself + others has uplifted my life in many ways!!

Life Beyond Illness.

My life beyond illness consists of living in the Southern United States. My family consists of my partner of 7 years, our sweet furbaby Ella (she is 5), and our baby boy-- whom we will be welcoming in just a few short weeks.

My hobbies include anything that allows me to be a homebody! I also have a bakery business called Lacie's Loft that was established in 2022.

At this point in my life, I am most excited for my new journey into motherhood, navigating chronic illness as a first-time mom, with the most amazing partner by my side to help!

Chronic Illness Affirmations + Reflection.

• You are allowed to mourn the loss of your body.

• How others react to your illness(es) is not a reflection of your self-worth.

• You are not a burden to those around you.

• Rest doesn't always have to come with reason.

• Mobility aids are for our comfort, not for others' approval.

Reflection questions:

• Am I getting plenty of rest?

• Am I setting healthy boundaries?

• Have I shown myself compassion?

• Have I taken the time to do something that I enjoy?

• Is there anything I am holding onto that I need to let go of?

• Are my choices aligning with my health?

"My voice is loud for those who have been silenced." -Lacie LaJoie"

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Life as a congenital blind girl, chronically fighting and advocating illness. onh. grief. mental health + Instagram: @lacielajoie

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Being Part Of The Chronic Conversation!

Being Part Of The Chronic Conversation!
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