When Health Stories Project invited readers to share their experiences with lupus, we received a lot of responses, which ranged from humorous to heartbreaking. Lupus, a long-term autoimmune disease in which the immune system goes haywire and attacks healthy tissue, affects everybody differently but it is a life-changing diagnosis for all. We asked the community three simple questions and will let them answer in their own words below.
Dan
What’s the hardest part about living with lupus?
For me, it was the stigma and lack of understanding in what others would think, which caused some alienation.
What advice would you give to someone newly diagnosed?
Get a rheumatologist to treat you and answer questions and find a lupus support group in your area. Stay out of the sun and take your medications religiously. Be wary of people with claims of cures.
How do you manage your lupus symptoms?
A Chinese herbalist who had been practicing for more than four decades put me on a strong regimen for 15 weeks. Thankfully it worked for me. I stay out of extended exposure to the sun, which was difficult when I lived in Hawai’i for two years. I still don’t eat alfalfa sprouts.
Jennifer
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What’s the hardest part about living with lupus?
It’s hard to look back on the person I was. I had a full-time job plus a very busy volunteer job on the weekends; I was a busy mom; I was physically fit and felt good about myself. I know that even if I get to the point of medically meeting my goals, I won’t ever have that life back.
I try to remind myself that there’s no use looking back and that I should embrace my life now and the progress I’ve made since I was diagnosed six years ago. Chronic illness has given me gifts but sometimes grief still crops up. I do my best to honor it for a moment and keep going.
What advice would you give to someone newly diagnosed?
Assemble a team of doctors who treat you like you are a member of the team. It’s not you versus them. You should all be working together to make treatment decisions. If your doctor blows off your questions or makes you feel small, find a new doctor.
How do you manage your lupus symptoms?
When I first heard I had lupus, I was terrified. I did not want to take steroids. My mom died from complications due to lupus and APS [antiphospholipid syndrome] and I’d seen what steroids had done to her. I decided I was going to get healthy and just kick lupus’ butt. I was running four to five days a week and training for a marathon. Then my rheumatologist told me my numbers weren’t looking good and wanted me to start CellCept, at the very least.
I resisted for months. A year later, in the hospital with a new rheumatologist, we discussed all the medications. I ended up having to take the ones I resisted but I understand why I’m taking them and we discuss them every visit and make adjustments as we can.
Julie
What’s the hardest part about living with lupus?
I’ve always been self-sufficient and lupus took that away from me. I’m not dependable now.
What advice would you give to someone newly diagnosed?
It WILL get better. You will find a balance in life. It does take time.
How do you manage your lupus symptoms?
It’s changed over time. When I was first diagnosed, it was horrible. I couldn’t do much of anything. It took many years to find the right course for me. Then we moved from New York to Florida and I felt much better.
Josee
What’s the hardest part about living with lupus?
Living in constant pain, even when you get used to it sometimes, and not being able to plan or control anything. When I was diagnosed, my life was flipped upside down. I had to begin giving up a lot of the things I loved and had to learn to focus on listening to my body first and foremost.
Sometimes I can’t eat without pain. I wake up some days and I can’t move from swollen joints and kidney issues. There are nights I can’t sleep because of the pain. My husband does a lot of caregiving for me. As newlyweds, rather than having the stress of careers, housing, what to watch on Netflix, and when to have kids, we also were worrying about money for my medications, doctor visits, tests, and surgeries. My physical appearance began to change as well.
Negativity and pain filled my heart and affected me in all aspects of my life. I hated God and I hated anyone that did not understand.
I didn’t understand why all of this was happening to me. I hated being such a burden on my husband, family, and others. I remember the loneliness I felt even though I had so many people around me to bless and buoy me up. Depression consumed many parts of my life.
What advice would you give to someone newly diagnosed?
First, I would say to them, “I’m so sorry that you have to live life with this awful disease.” My advice is that life is going to be so hard but you can’t let lupus become an excuse. Symptoms are different for everyone and it might take a while to figure out what works best for you, but first and foremost, you have to listen to your body and find out what it needs and most of the time what it needs is the last thing you want to do.
How do you manage your lupus symptoms?
First, I had a rheumatologist make sure that I had the disease and continued to follow up with him. I have tried many different medications including injections and infusions. The approach that I take is listening to my body. If I have a to-do list of 10 things, my body can normally only do about three and I have to listen or else I will spend the next day not being able to do anything. I have treated my body as a warrior because of what it constantly goes through, so rather than being upset and hating that my body is messed up, I try to treat my body softly because it is doing the best it can.
Really interesting read to hear different experiences.