Interview with Rae Tosh - living with chronic fatigue

Name:

Rae Tosh

Story: (tell us about your experience with an injury or illness)

I got sick a little over a year ago with something none of the doctors could diagnose. I saw an urgent care doctor, my primary care doctor, a new primary care doctor, a neurologist a few hours away, and eventually a pediatric rheumatologist at the Medical University of South Carolina who diagnosed me with a rare disease called Hypermobility Ehlers Danlos Syndrome (hEDS), which is a connective tissue disorder that comes with several comorbidities.

How has it changed you?

It has changed me in limiting my ability to do certain things, but it’s also increased my determination and grown me closer to my family and the Lord.

What was the most important lesson you have learned?

The most important lesson I’ve learned is probably that God is always in control and He can use anything for His glory, including chronic illness.

Was there something you could have done or not done to prevent it?

Ehlers Danlos is a genetic disorder, so there’s nothing I could have done to prevent it.

If you wore a sign what would it say?

There are a lot of battles fought behind my smile.

What part of your daily life have you had to do differently?

I’ve had to do a lot of things differently, even just sitting and standing. Because my connective tissue isn’t made properly, my tendons and ligaments struggle to hold my joints into place so I have to be very careful how I’m holding myself in order to keep certain joints (like my ribs and hips) in place. I’ve also had to learn how to pace myself because of the chronic fatigue that comes with hEDS.

What is the hardest thing you have had to go though?

Fighting severe fatigue that can keep me in bed for days and can make things like school incredibly difficult.

How could the world around you support you better?

Educating themselves about the reality of chronic illness being a constant battle rather than assuming that I’m fine simply because I’m wearing a smile.

Do you have any regrets about the choices you have made during your illness/injury?

No, I have no regrets on how I’ve reacted to it, as everything I’ve done has drawn me closer to God.

What was the thing that gave/gives you hope?

The knowledge that God can (and already has) use it for His glory! When He says “all things” in Romans 8:28, He means it. That and the fact that strength comes in weakness because it forces me into a deeper reliance on Christ (2 Corinthians 12:8-10).

What is a piece of advance you would give to your younger self?

(I’m assuming you meant “advice” not “advance”?)

I would tell her not to waste her health, because she only has it for about 17 years.

What was your life before vs. now?

Before I was sick I was a beach volleyball player and incredibly busy teenager, involved in just about every activity you can think of, but now I can’t play sports and mostly just focus on school, my faith, and writing, fitting in music wherever possible.