3 Things I've Cut Out of My Life Because of Lupus

When I first became sick with lupus, I had no idea how much my life was about to change. I had to learn to carefully manage my energy, juggle doctors’ appointments and medications, and navigate life in my early twenties with a life-threatening disease.

But one of the biggest ways lupus has affected my life is by decreasing the amount of time I have each day.

Less time in a day with lupus

In order to manage my daily fatigue, I have to sleep 9-12 hours per night. This means that by the time I wake up, my able-bodied peers have already had 2 to 3 hours to work, exercise, or to simply enjoy time with friends. In addition to having less time in my day, life with lupus means being aware of my disease triggers and avoiding them.

Over the years, I've learned to let go of activities or even people that add stress to my life. This is because stress is my biggest disease trigger. Below are some things I've given up in order to live my best life with lupus:

Reducing stress with lupus

Mornings

During my first 4 years with lupus, I stubbornly forced myself to wake up at 9 am nearly every day simply because that was when I had always woken up. Like many lupus patients, I'm a Type A achievement-oriented person. My To-Do list was filled with things I needed to take care of, and every day I hoped to get an early start.

There was just one problem: I felt terrible every morning. My lupus fatigue is always at its worst in the mornings and is often accompanied by nausea or brain fog. Instead of actually getting my work done, I'd slump on my living room couch and stare listlessly into space. It took embarrassingly long before I realized how ridiculous I was being.

Now, I wake up around 11 am. I'll always be a little jealous of the extra 2 to 3 hours my healthy friends have. But being able to start my day with less fatigue and nausea is 100% worth it every time.

People who refuse to accommodate my illness

One of the most painful truths I've had to swallow since being diagnosed is that not everyone is supportive of my health needs. That family member who smirks or rolls their eyes when I mention my illness? The person who I thought was my friend that stopped calling or caring now that I'm too sick to hang out? Letting go of them was deeply painful.

Part of me will always miss them and wonder if the relationship we had before I got sick was ever really genuine. However, without them in my life, I have less stress-- and stress has caused several life-threatening flares.

Following the news 

Years ago, I remember being glued to my computer screen every day for months. I'd wake up and check the news, wondering if I'd still have health insurance by the end of the month or if the Affordable Care Act that I was dependent on would be repealed. It took an election to show me how lucky I had once been; this was the first time in my life that my existence was directly threatened by politics.

After the next presidential election and the confirmation that my health insurance would remain intact, I made the conscious decision to stop doom-scrolling. While the horrible events both overseas and at home portrayed in the news deserve coverage and attention, we do not have to personally read and become an expert on every subject NBC covers.

While ignoring the news might not be the right choice for everyone, it's helped me reduce my stress and find more time in my day.

I've become adept at scanning headlines to check for approaching hurricanes, new COVID waves, or changes to laws that affect me. Then I close my laptop and focus on the things that I do have the power to change.