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I Am Not Lazy, I Have RLS

Last updated: November 2022

I was around 9 or 10 when I got both fibromyalgia and restless legs syndrome (RLS). I went from being an active kid to not having much energy.

On the weekends, I could easily sleep for 15 hours, sometimes 16 hours. I was also having issues with my joints becoming stiff, especially in my knees, so I had to quit the one thing I loved the most: contemporary dance. I was devastated that I had to give up dance, but I could tell it was becoming a challenge in both my energy levels and my stiffening joints.

RLS and other conditions impacted my activities

I remember trying karate class about a year later and having to quit because I found I was too tired and it was very hard sitting on my knees. I had signed up with my older sister for the class and she stayed in it.

I knew that she and my mom both thought that I was becoming lazy.

Then when I first got my menstrual cycle at 12 years old, my endometriosis reared its ugly head. Agonizing cramps, highly irritable and very angry PMS, very heavy bleeding, and to top it off, more fatigue. I became even more "lazy" in the eyes of my family. My younger sister, who was getting old enough to be observant of things, even started to believe this, too, as the years wore on.

I wasn't dependable at work

When I was fired 8 years ago for being sick, I didn’t bother looking for work. I knew I would just run into the same issues because I was very sick.

I wasn’t dependable and spent lots of time in the bathroom when I was able to be present. I also wasn’t able to give much notice, because I could be doing great all day, and then 30 minutes to an hour before work my IBS would have me camped out in the bathroom in agony.

My family thought I was just being lazy

This was followed shortly after by being bedridden. I ended up developing atrophy, eventually. I would spend 14 to 15 hours a night sleeping, and then an hour or 2 after being awake, I would need to go to sleep for 3 or 4 hours more.

The rest of the time I was on the couch, too tired to move and in agony. My mom and 2 sisters thought I was being super lazy; they didn’t believe I was sick. To them, endo is just heavy bleeding and painful cramps.

They believed I just needed to think positive thoughts

Unlike when my younger sister and my mom were diagnosed with autoimmune diseases, my mom and 2 sisters didn’t learn about what endometriosis was. My mom and older sister believed that I just needed to think positive thoughts and I would be cured.

My younger sister believed that I just needed to read a book on trauma and I would be cured. They had seen how sick I had gotten after my gallbladder was removed; I was living with my mom and younger sister at the time to help them out.

When I was diagnosed with IBS a year later, it still meant nothing to them, even though my mom has Crohn’s disease.

Now I know better

In the last conversation I had with my younger sister before removing her from my life, she told me that she believed I loved being lazy and not having to work.

I used to think I was a lazy kid and teenager, but now I know better. Back then, I didn’t know I had RLS, fibromyalgia, and endometriosis. I didn’t know all three of those diseases caused fatigue.

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