The costs associated with my invisible disability

By the end of each month, I always find myself asking: Where does my money go?

I work as a freelancer in the digital marketing field, and I also teach courses in the same area. It’s a pretty lucrative activity these days, especially as digital work continues to expand. But somehow, this income is never enough. And the answer to my opening question is always the same: myasthenia gravis (MG).

I hate feeling like I’m victimizing myself or constantly blaming MG. I call it my “endless persecutor,” but truthfully, it’s also a bitter best friend. Even when it’s not positive, it’s always there; its presence influences so many of my life choices, including my career.

I was meant to be a physics researcher, studying astronomy and working in fancy labs. That was the original plan. But here I am now, writing this column from my living room. I love what I do and enjoy it deeply, but it wasn’t the life I had in mind.

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The financial cost

I’m lucky to have been born in Algeria, where everyone has access to free social security regardless of employment status. The state covers medical expenses, hospitals are free — although that often comes at the cost of quality — and medication is covered instantly with a special pharmacy card.

It’s a great system for those dealing with short-term illnesses, such as the flu or a sore back. But for people with chronic illnesses? That’s a whole different story.

Most of my money goes toward physiotherapy and what I call “comfort extras.” They include spa sessions, holistic therapies, my nutritionist, and a workout professional who ensures I don’t hurt myself.

But that’s not all. I spend a lot on transportation, especially Uber rides, since every extra step I take has a physical price.

And then there are the private medical facilities. If I want to speed things up, I have to go private — and that comes with a high cost. Some specialized medical tests aren’t even available in public hospitals. That’s something healthy people may never have to think about. They might not even realize how vast and expensive the medical world can be.

Even when I want to hang out with friends or join an activity, I must ensure it matches my energy level and physical ability. Most of the time, that means choosing the more expensive option — because comfort, unfortunately, is a luxury. And I always end up paying more for the accommodations I need.

The mental cost

Then there’s the mental toll. I attend therapy regularly, which costs me anywhere between $300 and $500 a month. It’s what helps me stay mentally stable and avoid breaking down each time a new challenge comes up.

I may seem positive about my condition now, but it took years of inner work to stop collapsing emotionally when things got hard.

Even when it comes to hobbies or passions, I almost always have to choose the more expensive way to enjoy them. Group activities are often out of the question, so I go for private sessions where I can control the pace and setup.

And then there’s my obsession with the future. I overplan everything out of fear that something will go wrong. I constantly think about investments and backup plans in case my body reaches a point where it can’t keep up anymore.

In the end, I might seem like someone who enjoys highlighting the small wins of living with a chronic illness or invisible disability. I’m definitely a creative problem solver, but that doesn’t mean I’m rich!

Any disability comes with a cost, whether it’s visible or not. I can’t even imagine what my life would be like without the basic support I get through my national health coverage. My heart goes out to anyone who faces this battle without that safety net.

And I have to say thank you to my parents. I still live with them, and they continue to support me financially when I can’t handle it alone. Even though they still struggle to fully accept my diagnosis, they never hesitate to help.

Life has its ups and downs. If it wasn’t illness, I’m sure I’d be dealing with another kind of crisis, just like anyone else. But for now, this is my reality. And I’m learning to make peace with the cost that comes with it.

Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.