Having a hidden disability has never been easy. People who don't have a disability will never fully understand how I feel and what I go through, but it's never too late to learn!
Whenever I tell people what it’s like having a hidden disability, I describe it like this: I am in a bubble that no one else can see. I am the only one aware of what happens inside the bubble. Everyone outside the bubble looks in with curious and, at times, judgmental stares. They don’t see what I see or feel what I feel. This bubble is a barrier between me and the outside world where people see me as “normal.” They don’t see my daily struggles because they don’t have access to my bubble and never will.
My name is Marika, and I was born with a rare neurological condition called Ataxia. It’s a progressive condition that affects my ability to walk and my fine motor skills, and also I get head tremors. I get excruciating migraines that can knock me out for up to two days. Due to my condition being progressive, there is a chance it could get worse the older I get, which is terrifying to think about.
There have been times where I have been incredibly frustrated due to my symptoms making certain things difficult. I joke and say that I have had my midlife crisis at 20 because, after my diagnosis (at 19 years old), I went into a depressive state that lasted a couple of years. I thought my diagnosis was the worst possible thing to happen to me.
After years of blaming my disability for everything that was going wrong in my life, I realized that if I continued to be depressed about it, what kind of life would I be living? A regrettable one! I couldn’t let that happen, so I grabbed a pen and a paper and wrote down all my life goals. Travel the world, live in another country, get a college degree, and start my own business—I have accomplished every one of those goals.
I lived in London, got a college degree in Travel and Tourism, traveled to over 50 countries by myself, and started a travel blog where I share my unique experiences around the world. Despite my doctors telling my parents that I would never be independent and would need a lot of care, I did what they thought was impossible. I proved everyone, including myself, wrong.
Having a hidden disability has never been easy. People who don’t have a disability will never fully understand how I feel and what I go through, but it’s never too late to learn! Here I have a list of things people don’t know about having a hidden disability and will hopefully give you insight into my daily life.
There Is an Ongoing Battle Between My Body and Mind
This battle is hard to explain to people because how do you explain the feeling of not having control over your body? It’s not easy! But if I have to explain it, I would say it’s like being really drunk. When you are really drunk, you can have trouble walking and slur your words. Generally, you will feel better the following day, unless you get a horrible hangover, but even that only lasts a day.
Ataxia causes me to have “drunk-like symptoms,” and they will never go away. I have episodes where I stumble, slur my words, struggle with fine motor skills, and get migraines that feel like I am being hit over the head with a hammer. I do take medication that somewhat controls my symptoms (my migraines and tremors), but at the end of the day, these symptoms have complete control of my body, and there is nothing I can do about it.
Just Because I Look Capable Doesn’t Mean I Am
If you look at me, you won’t see a “disabled girl.” No. You will see a girl who looks like she can do anything and everything as you would expect. This problem is the difficulty of having a hidden disability. Tasks most people may find easy can be incredibly difficult for me. For instance, have you ever thought about whether you’re able to carry a tray of food to a table? Or whether you can disembark a swaying boat without hurting yourself? Were you ever worried as an adult that you couldn’t ride a bike without falling? Your answer is probably no.
My disability used to embarrass me. The idea of asking people to help me never even crossed my mind. I didn’t want to make my problems someone else’s or become a burden. But I soon learned the hard way (spilling a tray of food on the floor of a moving boat) that I can’t do everything, and asking for help sometimes isn’t a choice. I went through a long period of time where I didn’t tell anyone about my disability because I was ashamed. I was sure that my friends would ditch me, or I would never fall in love because who wants to be friends or date someone with a broken brain? I thought if I kept it to myself, it would be like it didn’t exist.
But when my symptoms started to worsen, I knew that I had to tell the people closest to me. It took me a while to get comfortable enough to open up but telling my friends and family was the best thing I could have done. I will never be capable of riding a bike or getting off a swaying boat without assistance, but I know now that I can always ask for help if I need it.
Stress, Heat, and Anxiety Can Trigger a Seizure-Like Episode That Can Leave Me in Pain & Sluggish
It’s hard for me to describe the pain I feel when I get a migraine. Well, actually, they aren’t migraines. These “migraines” are episodes of dizziness, nausea, and severe head pain, but people generally don’t understand what that means, so I say they are migraines. Stress, anxiety, and heat are common triggers for me, and before I get an episode, I can feel it coming on. My balance starts to worsen to the point where I can hardly walk, so I know I need to find a seat or a bed.
I slowly start to get very dizzy and become groggy. The pain begins to build up until it becomes excruciating, and I can’t do anything but lie down with the lights off—even if I am not tired. My migraines can last anywhere from a few hours to two days, and when one hits, it’s incredibly difficult for me to get up, even to go to the bathroom. I sometimes vomit, so I sleep with a bucket beside my bed.
Luckily, my episodes are somewhat controlled by medication. However, occasionally, I still get them, and currently, they have been happening more frequently, which may have something to do with the progression of my condition. Traveling can be especially difficult because if I am on a trip and get one, I must quickly get to my bed, which isn’t always possible.
When I traveled to Colombia a couple of years ago, I got a migraine on my first day (probably due to the heat) and had to stay in bed with my portable fan until it passed, about two days later.
The Need to Advocate for Myself Occurs Regularly
I have never been good at standing up for myself. I always got my mom to fight my battles because I didn’t know what to say to get people to listen to me. The older I got, the more I realized I needed to learn to advocate for myself.
When I started traveling alone, I quickly learned that no one would fight my battles for me. I was on my own. It’s up to me to get the accommodations I need. One such accommodation is the need to preboard flights due to my balance issues. They never ask me any questions; they just let me do it. Sure, I get dirty looks from people who think I am cheating the system, and yeah, I get people who yell “disabled and elderly only.”
At the end of the day, though, I know what I need. Those people don’t. I know what I can and can’t do, and I am willing to fight for that.
OCD Can Dictate How Long I Spend in a Place
Obsessive thoughts and compulsive tendencies are common in varying degrees in our society, whether it’s needing to color coordinate clothes or alphabetizing books. Me? I need to read everything in a museum. My OCD is so intense that I will sometimes spend days in a museum. If I visit the Louvre, I will be there for years!
When I travel with people, I am better at controlling my OCD. I can visit a museum and go at the same pace as them, but when I am alone, well…the staff at the museum will see a lot of me! I can easily spend weeks in a city just exploring museums. What can I say? I love to learn, and I feel that if I don’t read everything, I could miss out on learning something important!
I Can’t Drive, Which Makes It Difficult To Travel to Some Places
I got my permit for the first time when I was 19. I was ecstatic. I couldn’t wait to get behind the wheel and start road tripping. I didn’t realize that driving with Ataxia would be almost impossible. I thought I could drive until I got an excruciating migraine while I was behind the wheel. The stress of multi-tasking that driving requires caused my episode, and at that moment, I realized driving would not be in my future.
Traveling, for the most part, is accessible without a car. Many places have excellent public transportation, but some places don’t. For instance, visiting smaller towns and villages can be challenging without a car. If I want to see a small town, I usually end up paying an arm and a leg for a private tour or take a taxi. When I plan my trips, I always have to consider how I will get around each destination.
My Disability Affects My Immune System, Which Means Getting Sick on the Road Is Inevitable
If I had a dollar for every time I got sick on a trip, I would have, well, a lot of dollars! I get sick so often on my travels that I just expect it. I think I’ve seen a doctor in every country I have visited.
When I was in the Czech Republic a couple of years ago, I got a terrible sinus infection. I planned on going to a local festival in a small town, but of course, I got sick right before. I didn’t have time to go to the doctor, and the place where I was going didn’t have a doctor nearby or at least one that spoke English.
It was frustrating because I had planned this trip months in advance, and I couldn’t even enjoy the festival. I went for 10 minutes and then back to my hotel to sleep. I visited a doctor a few days later when I arrived in Krakow and got medication. Needless to say, I have begun traveling with antibiotics from my doctor, so I don’t have another incident like that.
Slow Travel Is a Lot Easier For Me
Fast-paced travel seems to be the norm these days, and it makes sense, especially for those Americans who only get two weeks off work. But for me, fast-paced travel means stress, stress, and more stress! I can get overwhelmed if I feel rushed, and you know what stress and being overwhelmed leads to? Migraines!
Another Ataxic symptom I have is fatigue, and so I may explore a city for a few hours in the morning, but then I can feel tired and sluggish the rest of the day. I may not see as much as the average person does in a short amount of time, but that is the beauty of slow travel.
I can easily spend weeks on end in a city and never get bored. I spent a month in Riga, Latvia, last year and still didn’t see everything I wanted to see.
I had a great time and didn’t feel rushed–plus, I got to immerse myself in the local culture, explore parts of the city that don’t get many tourists, and even venture outside of the city. Fast-paced travel can work for some people, but for me, I like to take my sweet time.
I Have To Plan My Trips Meticulously
I have always loved planning, especially trip planning. I have itineraries and spreadsheets, and I am so excited when I get to use them. My trip planning requires a lot more thought and research than the average person. I need to make sure there are activities suitable for me at each destination.
For example, when I was in Colombia, I went to this gorgeous town called Salento, renowned for the worlds’ biggest palm trees, requiring a hike to see them. I researched whether the hike was strenuous, and review after review said it was easy. Those reviews convinced me to do the hike, but I quickly regretted it. It was one of the most challenging hikes I have ever done. Would I have still visited Salento if it wasn’t for that hike? Probably. Would I have done the hike had I known it would be so difficult? Probably not.
Another reason I need to plan so carefully is to figure out transportation. As I mentioned above, I can’t drive, so I have to make sure there is transportation that will get me from point A to point B easily and safely. For me, trip planning is a matter of safety and ease. Plus, travel stress is the worst—am I right?
My Condition Could Get Worse
Ataxia is a progressive, degenerative condition, meaning the older I get the worse my symptoms could be. I get scared thinking about my future because it is the unknown, but sitting around sulking won’t change anything, so I decided to do something with my life. To make a long story short, I did! I mixed my love of travel and writing to create my travel blog: Clumsy Girl Travels. I share my unique perspective about traveling, and I show people that even though they may struggle with certain things, that doesn’t mean they aren’t capable. I am living proof of that.
Yes, my condition could worsen, but it hasn’t yet, and I am thankful for that. Until it does, I will continue to educate people on disability rights and inspire those in the same boat as me to live their life on their terms.