Throwback to a September night in Alabama. It’s hot and the stars are sparkling, but I wouldn’t have known. The roof had been the peak of my view all day.

After hours of scrolling on my phone, I went to bed exhausted. I wake up at noon, 10-something hours later, and I feel drained just the same. I stumble into the living room and sit with my dog, Schooner, and then go take a warm shower – that should make me feel better, right? It didn’t, so I go back to laying down.

All that “self care” and I still feel useless. Hopeless. Depressed.

The physical effects of FA can be extremely exhausting, but if you asked me what the hardest thing about FA is, I would point to mental and emotional wellbeing. Many other rare disease patients might agree with me: “A 2021 study on rare disease patients found that up to 42% showed signs of moderate to severe depression,” said FIRST News.

When I was diagnosed with Friedreichs ataxia as a 16-year-old, I was told I needed to see a cardiologist yearly. They told me physical therapy helps manage symptoms and that I’d be okay if I ate a balanced diet and exercised regularly. Those things are good and true, but nobody helped prepare me for the years of mental and emotional battles that I still deal with at 23.

I was told I’d lose physical ability, but there’s no manual on how to cope with that. No one helped guard me for going to high school after being diagnosed with a rare disease, or how to tell my family and friends about FA. It can be extremely heartbreaking to explain to the people you love how broken your body is.

Explaining it to an adult is complicated enough, but imagine telling a child that you have something called Friedreichs ataxia – I didn’t even know what that meant when I first heard of FA at age 16. I am lucky to have a little brother – Omarion – that loves me, tries to empathize with me and is just an extremely kind kid. Still, there’s no perfect way to get a kid to grasp a debilitating disability.

One of my friends that I look up to that has FA, Jacob Thompson (@ten20words), gave a great example of this. He is a father of three boys, and they love to run and play ball, as Jacob used to. He’s already grieved and accepted his diagnosis and the loss of athletic ability, but he’s still heartbroken when his boys call to him, saying “Daddy, daddy! Run with us!”

As Jacob told me in an interview, “There’s no manual for that.”

“That grief is an ongoing thing that I have to learn to adapt to,” Thompson said. “For me, a big thing is – instead of overcoming (FA), it’s finding joy, finding peace and finding purpose in the midst of the challenge.“

Empathy is what my brother and other family members of people with FA have built. Even if they don’t know exactly how a neuromuscular condition makes your body feel, they have seen the consequences of it and have developed a concept of “shared reality” with me.

On the other hand, not having a shared reality with people I meet or don’t know me well is one of the most frustrating things about FA that sparks my mental slumps. I feel that people constantly underestimate and undervalue me based on the things they assume I can or can’t do when they see me using a walker/wheelchair. I still have people acting like they just saw a dog speak when they see me driving up in my car for the first time. People who see me loading my walker in my car by myself in public act like they need to rescue me from such an arduous task (that I do multiple times every day with no trouble). I wish people understood the fight I’m in to do the things I love as long as I can instead of assuming that I instantly become dependent because of my health condition.

Because of that, I constantly feel the pressure to prove myself to people and break that stigma that I am capable of less, but that often leads to me overwhelming myself. For example, I want to prove my value as a journalist, but I ended up taking too large of a workload and getting burned out in my first job out of college. It has been a struggle to find a good balance of being fulfilled but not stretched thin in my career. And communicating those boundaries to others as I learn them is another thing I have to figure out how to do.

On top of that, my vocal troubles only make me feel more misunderstood. In loud environments, I am perceived completely different than in a noiseless room where I can talk confidently and be heard. And I’m still searching for the words to say when I’m asked “Did you catch a cold?” in response to hearing my raspy-sounding voice. Responding to that one has never been easy, though I know it sounds silly.

And I’m likely not done getting that question. FA isn’t going anywhere anytime soon.

That’s what makes grieving FA so tough – it’s ongoing and developing. Most sicknesses are temporary: you get a fever, it sucks, and you get better in a few days. You get a cold, you lose your voice for a day, and then go on with your life. But FA will likely plague me as long as I roam the earth. There’s no cure. No bell to ring.

As Jacob told me, “Overcoming can be a loaded term because so many people have the story of you HAD a challenge and then you overcame it – you no longer have it. For [people with FA], we still have challenges every day. I wake up each morning, my feet hit the floor, and I have FA.“

I feel that bringing these mental health struggles to light is very important because it is an issue that’s not typically openly discussed. It can make you feel ashamed or embarrassed, as it did for me. I want to be a positive light to others, but I feel like a fraud sharing words of encouragement at times when I don’t feel it for myself. You know how it’s easy to give dating advice but hard to live it out for yourself?

However, I want others to know that even in my darkest days, I still have hope. Even in the midst of a cloud, I know that the light is waiting to shine brighter than ever on the other side. Feelings and emotions are temporary, but faith lasts through them all.

My message is this: never let a single season of life determine the way you live. The calendar will always flip, the clock keeps churning, and I promise you, God never stops working through it all.

Keep fighting.