This is personal.
On November 4th 2022, after months of unexplained symptoms, I was told that I had Multiple Sclerosis. The shock of being diagnosed with a health condition is unlike anything else. All of a sudden, life, as you know it turns into a very scary reality.
Leaving my neurologist meeting with nothing but a pdf document presenting me 3 options for lifetime medical treatment, from worst side effects to least side effects. I felt lost, unequipped, inadequate, and so alone. I did not know anyone with Multiple Sclerosis.
Not knowing where to go from there, who to speak to for further advice on managing the condition, what other options are available for treatment, how to mentally deal with this diagnosis, how to tell my family, how to tell my employer, I turned online as most of us do. I was looking for reassurance from real people, who have been through what I was going through now. I needed to speak to people who could understand me, and help me make the next right move in this new reality. Little did I know how difficult that would be. From the very scary medical website comments to incredibly negative posts on social media, to trauma dumping online forums, maintaining a positive mindset was becoming increasingly difficult. I kept thinking… Am I condemned? Is this it? Surely they must be people who are fighting this? People who believe it’s possible to overcome this? Where are they hiding?
It took me to resign from my job and move to a slow-paced country across the world, to create a space where I could dedicate myself to gathering enough information for me to learn how to navigate my condition. After months of trial and error, I finally found a routine that allowed me to integrate all the new habits needed to “live” with Multiple Sclerosis, with the practicalities and constant changes that come with modern life. I progressively started to notice people reaching out to me to have a chat with their friend, sister, or colleague, who was just diagnosed with Multiple Sclerosis, to tell them “how I did…”
While autoimmune conditions are complex, I realised the limitless power that knowledge, connection and belief have. But most people can’t afford to pause life to learn how to navigate a diagnosis and a new reality.
Which is why my husband and I created Lori.
Living with an autoimmune condition is challenging. You're left feeling alone, overwhelmed, and unsure where to turn for reliable information and support.
Lori is a collective of positive, resilient & hopeful people with autoimmune conditions across the world, sharing the habits and behaviours they have adopted to navigate life after their diagnosis.
Whether you have a condition, or you care for someone with a condition, you are Lori.
We are Lori.