I recently read an article on the Johns Hopkins website saying that September is Pain Awareness Month. Whaaaat? I didn’t even know there was a such a thing!
According to their website:
- Nearly 100 million Americans experience chronic pain.
- Pain is a warning sign that indicates a problem that needs attention.
- Pain starts in receptor nerve cells located beneath the skin and in organs throughout the body.
- Living with pain can be debilitating and adversely affect everyday life.
Because of this, I wanted to share some reminders for those with Lupus and dealing with chronic pain/fatigue.
- YOU ARE NOT LAZY, YOU’RE JUST EXHAUSTED.
This can’t be any more true. On Monday this week, I had this whole plan of getting the house clean before my husband came home from work. I had about 5 loads of laundry that I was behind on. The kitchen needed to be cleaned. The bedroom needed to be rearranged so I can fit our baby’s bassinet in there. But, the minute I woke up I was just so tired. I knew this wasn’t the day to get ANYTHING done. No matter how much my mind wanted to do things, my body wasn’t gonna let me! - YOU CAN DO EVERYTHING RIGHT AND STILL BE IN PAIN.
I was diagnosed with Lupus at such a young age that I haven’t always been the best at taking my daily meds, but for the last 5 years, I have been so religious at taking them ON TIME EVERY DAY. I stay out of the sun as much as I can to prevent photosensitivity. I don’t participate in strenuous activities and overwork my joints/muscles. I try everything possible to prevent pain. So, why am I still in pain? There’s really no reason. Your body does what it wants when it wants to, no matter what you do. It’s so unfortunate, but it’s just part of accepting your condition. - AGE DOESN’T MATTER. YOU CAN STILL EXPERIENCE PAIN AND FATIGUE, EVEN THOUGH YOU’RE YOUNG.
I really hate this one because I have a disabled placard and I can’t tell you how many times I had to use it because I was in pain. It’s so embarrassing when people stare at you, or even have the nerve to tell you you’re misusing someone else’s placard. Just remember that you know your condition best and no one else can tell you how you should feel, especially not a stranger who you’ll never see again. - THE ABILITY TO WORK DOES NOT MEAN YOU ARE HEALTHY. IT MEANS YOU HAVE NO OTHER OPTIONS.
I was once out of work for a whole week due to a Lupus flare I was having. On my first day back to work, I had my division manager ask how I was doing. I told her that I still wasn’t “my best, but I’m better than I was last week”…do you know what she said? Her response was “well, you look good at least.” Totally dismissed my pain. I’m sure she didn’t mean to, but people who are healthy just don’t understand. They think that because you’re at work, you must be fine. But, from my point of view, I ran out of sick leave and needed money to pay bills so I had to force myself to return to work. - YOU DON’T HAVE TO BE SO POSITIVE ALL THE TIME.
This is one of my problems. I remember my mom getting so mad at me every time I went to doctor appointments because when the doctor would come in, he would say “Hi Shaina, how are you doing?”. My automatic reply was always “I’m fine, how are you?” She would tell me…”Why do you say you’re fine? You’re not fine!” I guess it was just me being polite? Or maybe I’m just “too positive”? Is that even a thing? But as an adult, I now understand what she meant. You don’t always have to hide your vulnerability. It’s ok to look sick because you feel sick. You don’t have to cover it up and look ok. If you try to look ok, you’re still not going to feel ok, so why hide it?
I hope that by reading this…
- if you have Lupus or any other chronic illness, you realize that you are not alone in how you feel. Don’t ever let anyone make you feel like your pain isn’t justified, no matter how minimal the pain is. Only you know your own body.
- if you don’t have Lupus or any other chronic illness, you have gained some insight into what it’s like for someone else – maybe even someone you know. We don’t always like to share how we feel. I definitely don’t even show my own family members, but it’s nice to know that they understand.
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