The Effects of Being a Caretaker with Lupus
Last updated: March 2023
Being a caretaker and someone that has lupus can be overwhelming. Of course, I am a mother of a 2-year-old and a wife. It seems like my family has been getting sick lately. Whether it's Covid or the flu, this year alone my family has caught Covid twice and also the flu. Being pregnant and having lupus has impacted me because I have not been able to take medicine due to being pregnant. So while I was nursing my husband and daughter back to health, I remained sick longer than them because I could not really take anything.
No one understands the pain of lupus
I feel like no one understands our pain and sickness, especially while pregnant. My skin is flared up right now, and I have been in constant joint pain for the last 2 weeks. My daughter would find me crying sometimes, and she would call her dad to come and take care of me. This is the beauty of having kids. They will always love you whether you are down or up. Now lately, since where I live, hospitals are closing, and other people have to go to different healthcare systems. It's like a needle in a haystack trying to get messages back from our doctors as soon as possible. To get a response, it is better to call than send a message through MyChart.
Being a parent with lupus is exhausting
I had a moment recently where I told someone close to me that I needed a break because I was not feeling well with my lupus, and they said, "I mean, what do you need a break for? You are a stay-at-home mother who can sleep and move around when you want. If you stay inside, you are just going to become bitter." People not realizing that being a parent is a never-ending full-time job. Entering in and out of depression, worrying about my unborn child and its issues, I just needed a break. It hurt to realize I lacked the support I hoped I would have. Right then, I felt like no one understood what people with lupus go through. Because a child, well my child, does not have a set schedule where she would take a nap or go to sleep. Sometimes she would not take a nap at all, and I would be up with her all day and night. While still taking care of the other house duties.
Put yourself first
Sometimes I wonder why people who do not understand do not try and educate themselves. Being pregnant with lupus sometimes has its blessings and downfalls. I barely had flare-ups with my daughter, and with my unborn child, I now have frequent flare-ups. My life has been an up-and-down rollercoaster, I should say. So sometimes, my body will shut completely down on me, and my husband will have to miss work because I will not get up. Sometimes it will become overwhelming to where I sleep from 2 pm to 9 pm and still sleep throughout the night. We have to remember to put ourselves first even through hard times, and I learn that every day.
How are you most likely to respond when someone offers you unsolicited advice about your lupus?