Why Working Is a Big Deal for Someone With an Autoimmune Disease


I work today. An eight-hour shift. 4 p.m. – 12 a.m. Tonight will be my fourth shift in a row. Most people work a five-day week, so some might wonder why this fourth shift is such a big deal.

I, like many others, experience chronic pain, and on top of that I have an autoimmune disease called Behcet’s. I will also be having two disks in my back fused in the next few months as the result of a spinal cord injury I have been dealing with for four years now. So again, why is this fourth shift such a big deal?

I push myself every day. Like a lot of people out there struggling with their own illnesses, I push myself too much on a regular basis then run out of spoons and crash.

A lot of people who love me wonder why I do this to myself time and time again. Coming up with an answer to that isn’t easy or simple.

My life started to change when I was 30. I started to experience fatigue, pain and multiple random symptoms. Nothing added up. At this point I was sometimes working 12-hour days. I was always on the go and attributed my symptoms to working too much and not getting enough rest. I’ve always been a hard worker. I’m a personal support worker. The days are long and challenging. I would be the first to stay late if the next shift was working short and the first to accept call-ins if someone was sick.

By the time I was 32 I was really struggling. I suffered an injury to my back/neck at work. I spent months doing rehabilitation but eventually had to quit my job because after that injury I just couldn’t keep up. The things I used to be able to accomplish in a day became less and less. At this time I didn’t understand the difference between being tired and fatigued. And I began to experience depression, because accepting you can’t do what you used to be able to do is hard.

Now I’m 36. Over the last four years I’ve taken almost two years of sick leave. I’ve had to quit another amazing job that I loved. I survived a military move (my husband is in the military) and got settled in a new city. I got a job (not working as a personal support worker) I thought would be less demanding and hard.

What I’ve learned is that just being able to work is hard!

The struggles of dealing with chronic pain and an autoimmune disease that attacks at random is a reality I have to deal with every day.

I work because there are parts of me that don’t want to admit I can’t work. I’ve given up so much over the years. I fight to hold onto everything, even when it hurts.

So this fourth shift is a big deal because I’m exhausted. I’m actually beyond exhausted.

But I’m going to go to work tonight and put a smile on my face. I’m going to make sure all the residents get what they need, I’m going to get all my work done and I’ll look forward to my bed at the end of the night.

Tomorrow, when I’m hurting, I’m going to look back and be proud. I can’t always handle four shifts in a row. Some days I barely make it through two or even one. And I don’t know if or when I won’t be able to work that fourth shift again.

This week, despite the pain, was a good week. Not because I didn’t struggle, but because I accomplished something that for others may be easy but for me is very hard. I worked.

Now I won’t get into the fact that I have a pile of dirty dishes in my sink, dirty floors that haven’t been washed in weeks and mountains of laundry to do. I’m still waiting for my magic cleaning fairy to come. And even admitting my house is dirty is a feat in itself. Those who know me know I hate having a dirty house. But I’ve met some amazing people this past year who have taught me – if nothing else – that I have to prioritize where I spend my spoons. And unfortunately that means the dishes and floors will stay dirty for today.

Be proud of the things you accomplish in a day. Not everyone is going to understand the struggles. Not everyone is going to be able to see how much energy it takes some days just to get dressed. I’m writing this on my couch, in my pajamas.

I write this to give hope. To give strength to others who struggle like I struggle. You’re not alone. Today is day four for me. For that I am proud.

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