what to do when the future feels uncertain

As you might already know, I have not one, but two rare diseases: Charcot-Marie-Tooth disease (CMT) which affects 1 in 2500 people and Idiopathic Intracranial Hypertension which affects 1 in 100,000 people.

While you might look at those numbers and think — “1 in 2500 or 1 in 100,000, surely that affects a lot of people right?”

But living with these diagnoses — and dealing with the realities of the medical system and society — makes it painfully clear what it really means to have a rare disease.

It’s means a lack of medical research into treatments.

It means doctors who don’t know anything about your diagnosis — relying on you to educate them, or worse, watching them rely on Dr. Google for answers.

It means going to physiotherapists begging for help with pain, and being told they don’t have the knowledge or experience to help you.

It means getting weird looks and awkward responses whenever you explain your diagnosis. If I had a nickel for every time someone said "So… does that have to do with your teeth? You know, TOOTH disease? Ha ha??" 🙄

navigating life with a progressive disease

Yesterday, I shared a post about my thoughts on living with a progressive and degenerative disease. But one thing I didn’t dive into as much was how I manage both the emotional weight and the practical realities that come with it.

Living with a progressive disease means living with uncertainty.

I don’t know exactly when things will get harder or how much my body will change. I just know that it will.

This is the part of having a progressive disease that people don’t talk about enough.

Not just the physical changes, but knowing your future isn’t in your control.

So I plan and make decisions now — as much as I can at least.

Here are some of the biggest things I’ve had to consider. And if you’re in the same or a similar boat, maybe this will help you, too.

What if I can no longer work?

Now that work-from-home options are disappearing, it’s becoming clear that accessibility is never going to be a priority for most employers.

And for someone who deals with a lot of fatigue and struggles with commuting, this worries me.

While I currently work from home, I worry that this is not always going to be an option. And if my mobility and fatigue gets worse, my job options could shrink even more.

So my husband and I plan that one day we might have to permanently live on one income.

It means making sacrifices now so that we have a safety net when we need it later.

Because the reality is, there is very little support for disabled folks who can’t work.

And I know that not everyone has the means or ability to plan ahead like this, and that in itself is a massive problem.

The fact that so many disabled folks are left without financial security or support is unfair — and I could write an entire newsletter about how cruel it is that society and our governments don’t do enough for our community when we need it most…

Where is the most accessible place to live?

I live in Vancouver which, while beautiful, is also one of the most unaffordable cities in North America.

But it also happens to be incredibly accessible.

We have a world-class public transit system, mild winters (for the most part, anyways), and walkable neighbourhoods.

So that’s the trade-off.

It sucks living in a HCOL area, but accessibility is the most important thing to me. Not for just present me — but also for future me.

How do I handle the emotions that come with this?

The answer is that there is no right answer on how to handle the emotions that come with having a progressive disease.

I’ve been angry, sad, dismissive, accepting. And all of those feelings are OK.

But at the end of the day, it is what it is.

Because as much as you plan and prepare, the reality of a progressive disease is that you can’t predict anything — and you sure can’t control it.

So do what you can, and then just live your life.