Living with an invisible disability.
When I was in my mid-20s, I experienced trauma. Back then, I thought that this trauma triggered a snowball of issues. I had low-grade persistent depression lasting for over 2 years. This depression was combined with anxiety. I also had parts of my body going numb for long periods of time. The family doctor I was seeing at the time was no help, they wouldn’t take me seriously. After a stressful move in 2018, a very bad attack was triggered that rushed me to the hospital. After 3 years of nonsense and uncertainty, I got diagnosed with MS (MS stands for Multiple Sclerosis, it is an autoimmune disease).
“How could this be?” is the question anyone suffering from MS has. This illness is not hereditary, it isn’t something that is contagious, and it isn’t a gene thing.
I wasn’t born with a disability, it happened to me. Accepting this has been a lot of work (and not for me, but for my loved ones too), and continues to be a lot of work. It has brought me a lot of changes, frustrations, and some limitations. It has also made me a better, stronger, more resourceful, and more resilient person.
What helped me? Meeting others who have similar issues. Listening to those who advocate for invisible disabilities. Getting to know industry leads who have experienced similar issues.
Furthermore, learning about accessibility has allowed me to open up more on the subject and learn more about myself. Many people are not born with disabilities; accidents happen, our bodies age and illnesses occur.
Misconceptions
I want to share some misconceptions about invisible disabilities:
- Judgments: “But you don’t look sick” “Yesterday you were fine” “You are too young”…
- Pre-conceived ideas: When I had my strongest episode, I was not able to use my legs properly, despite being able to walk. One time, a random person called me “lazy” because I was using a lift. Do you need to see someone in a wheelchair or with a walking aid to understand someone’s ability? Many disabilities are invisible from the outside.
- Seeing disability as one thing → stop seeing things as black and white. Disability isn’t one thing, disability is a spectrum of things. Be it vision, mobility, hearing, or cognition. Each person with a disability is on a spectrum, no two are the same, or should be put in the same box.
If you want to learn more on the subject and get into someone else’s shoes for a few minutes, search for disability misconceptions videos on YouTube to get first-hand experience with topics on the subject
Social Media
There are some very insightful individuals that talk about their problems on social media. Here are some of my favourites!
Mo @msninjaaa on Instagram. I enjoy her account very much, she speaks for many with the quotes she posts. She is a motivational speaker living with Multiple Sclerosis, Hashimoto’s, & Migraines. Mo advocates for people with chronic illnesses.
But you don’t look sick — a non-profit organization founded by @melodyolander who aims to “ 💜 Making the Invisible, Visible”.
The Chronically Honest — an illustrator who describes her account as “Trying to HONESTLY illustrate the hardships of my chronic illness journey & raise awareness 🎗”…
Talking about the topic openly is easier than privately. Some people have the tendency to play it down because “one doesn’t look sick enough” in their eyes. Spending the little energy and nerves left (no pun intended!) on those individuals and such conversations isn’t worth it. Be mindful of how you address the topic with those having MS, in case they feel like sharing. Keep in mind, that they are not there to educate you.
MS through the eyes of technology 👀📱
MS is a progressive, immune-mediated disorder. That means, the system designed to keep your body healthy mistakenly attacks parts of your body that are vital to everyday function. The protective coverings of nerve cells are damaged, which leads to diminished function in the brain and spinal cord. It is also known as “the invisible illness” and the “snowflake” disease. Snowflake because every person that has it shows different symptoms; each person’s MS is quite unique, as a ❄
But what does MS feel like if it were a device? Here I compare how some common things to those with MS experience translated to something almost everyone has, a phone.
1. Cognitive Problems
Over time, about half of people with MS can have some cognitive problems. That means poor focus, slowed thinking, or a fuzzy memory. Often, these problems are mild and don’t really interrupt your daily life. It’s rare to have severe thinking problems.
2. Fatigue
Primary fatigue is caused by MS damage in the brain and spinal cord. And lots of processes might be involved. One idea from researchers is that passing messages around nerve damage takes extra energy. Secondary fatigue is caused by living with MS symptoms like pain, or disturbed sleep.
3. Health issues with no answers.
There is currently no cure for MS. The goal of treatment is to help you cope with and relieve symptoms, slow the progress of the disease, and maintain a good quality of life. This can be done through a combination of medicine and physical, occupational, and speech therapy.
4. Vision Problems
A common visual symptom of MS is optic neuritis — inflammation of the optic (vision) nerve. Optic neuritis usually occurs in one eye and may cause aching pain with eye movement, blurred vision, dim vision, or loss of colour vision. For example, the colour red may appear washed out or grey.
5. Spoons
The spoon theory is a metaphor created by Christine Miserandino to help people explain how it feels to live with a chronic condition. Simply put — spoons equal units of energy. The idea is that people living with health conditions like MS start each day with a limited amount of spoons.
World MS Day takes place on 30 May every year. Established by the Multiple Sclerosis International Federation (MSIF) in 2009, World MS Day seeks to unite the global MS community of more than 2.3 million people “to share stories, raise awareness, and campaign with and for everyone affected” by the condition.
Thanks for reading! ✌🏼
Sources
Everyday Health
https://www.everydayhealth.com/multiple-sclerosis/awareness-month/
Wikipidia.org
Mayoclinic.org
nhs.uk
mssociety.org.uk
