Sometimes I Feel Like an Imposter in the Lupus Community
In May 2016, I landed in the hospital for a week. Doctors wanted to find out how I had managed to gain 26 pounds from fluid retention in just two weeks. For 12 hours, Sunday night doctors and nurses poked, prodded, and questioned me. Then their shift changed, and I was poked, prodded, and questioned by the doctors and nurses of Monday morning.
That night I felt like a specimen. Six nights, a renal biopsy, and countless blood and urine tests later, and they were 95% certain they had found the culprit: lupus.
Two weeks later, I received reports that changed my life. My nephrologist turned his computer screen to show me the results of my kidney biopsy. There it was — definitive evidence that lupus inhabits my body.
That was a critical moment in my life. I’ve reminded myself of it often in the last four years, and more frequently lately. No matter how successful treatment may be, and no matter how shocked doctors are by my progress, I still have lupus. That’s a fact supported by data and documentation filed under my name and patient ID number.
This past year, I have struggled to write columns. It’s not that I’m any less connected to writing. But as I inch closer to remission, I feel more like an imposter in my own community.
Western society has a very rigid view of health, which leaves me in limbo. Lupus is a black mark on my name that I will never be rid of. I’ll never be healthy enough to fit society’s view of what being healthy is. Yet at the same time, as my medication does its job, I no longer fit the mold of “sick,” either.
In the early days of my diagnosis, the bad days outnumbered the good ones by a factor of 10. These days, my scale of measurement is different. My days are no longer classified as good or bad, they’re measured by how many hours I need to nap. If I’m lucky, I can make it through the day with a quick, half-hour nap. On worse days, I’ll lose half the day to snoozing.
Fatigue has always been my greatest struggle. But with lifestyle changes, medical treatments, and time, it feels manageable. For a long time, the fatigue was so heavy it was like lugging around dead weight. After years of putting one foot in front of the other and taking things one day at a time, I feel lighter and freer than I ever could imagine.
But those feelings come with a cost. Every step toward remission feels like a step away from the chronically ill community. I still have the paperwork to prove my membership, but my hardship feels comparatively insignificant these days. Struggling with fatigue doesn’t feel valid when compared with other people’s daily battles with joint pain, brain fog, and migraines.
When I received my diagnosis, I was lost, and I no longer knew where I fit in the world. It’s now 2020, and in many ways I feel like I’m back where I started. Once again, I don’t know where I belong.
Have you ever felt like an imposter in the chronically ill community? Please share your thoughts in the comments below.
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Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, Bionews, and are intended to spark discussion about issues pertaining to lupus.
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Comments
Peachette
Hi Kristiana,
I am somewhat like you. I live in the world of the chronically ill. There were so many of these illness that I struggled with all my life. It is refreshing to look at your page when I think, why do I have to live like this? So to see someone who is so determined to beat Lupus, a dirty little secret that was kept silent for so long. Helps me through the bad days.
I was diagnosed with lupus May 5th 2015 at age 41. I had my first child, only child at 37 and turned 38 one month later, September 2011. He was premature and only weighed about 2.6 kg but it was difficult for me to hold him and make his bottle, hence need to find out what is wrong with me. After so many poking and prodding, I finally got a doctor to run a full blood workup. So about two weeks later it came back to tell me that I have SLE Lupus. I went on from there to see many doctors for management. It is now Aug 2020 and the struggle is real, not so much visits to the ER but still challenging.
Lisa Marmon
I completely understand! It's the ole' "But you don't look sick," just in another form. I too felt like an imposter when in remission as I sat in the waiting room amongst others clearly in a flare. Go easy on yourself. You are successfully managing your disease. Be proud! Be vigilant as well, as flares do occur despite the fact that you are following "doctor's orders."
Tamara
I couldn’t have explained it better! That is exactly how I feel when I have periods of better times. I was literally thinking today how Lupus is not only a silent disease a lot of the time but a lonely one.
Ray Motsi
Very useful and encouraging.
Terwana Brown
I fully understand your struggle with feeling like an imposter. In 2005 I was diagnosed with lupus after years of health hurdles that yielded no answers. After two episodes that left me hospitalized garlic was discovered as a flare trigger for me.
Three months into aggressive treatment I gained 150 pounds and high prednisone dosage deteriorated my hips stopping the blood flow in my bones. Multiple surgeries and medications, physical therapy, and specialists appointments later faith lead me to healing in 2007.
From that point until 2018 I was medication free and there were no labs or evidence of lupus. I removed myself from lupus support groups and unsubscribed from Lupus News Today based on the feeling I was misrepresenting as having an autoimmune disease that was no longer a part of my daily life.
p senapati
Thanks for sharing . I think all of us face similar difficulties in life with LUPUS.
Luz Azcona
Hi Kristiana,
I know exactly the feeling. I also have lupus nephritis. I was diagnosed at 14 years old. Had chemotherapy for 2 yrs and was on high dose of steriods for a long time. You reminded me of one of my writings when I got out of the hospital. I also wrote those words. " I don't know where I belong." Fortunately, I was taught by a single to believe in God. That was my only drive. People would not even believe I was sick and they would ask why I was yawning at times. I kept going no matter what as I went to the gym, walked a lot, and never gave up because of my faith and my mom. Of course our eating habits also make a big difference. Unfortunately, I didn't realize this until my mom had a stroke. I took care of her for 1 year. One thing you learn with lupus is that when your adrenaline is up you get strength to do what you have to do. Once my mom was better that was when my lupus flared up. I abused my body because I am an only child and I needed to take care of my mom. But as I took care of her I educated my self about food and their goods and bads. So I started once again from 0 to take care of my body and get back on meds for a bit. I hope this can help in knowing that we all lupus patients can understand that feeling. I also learned that to educate our family about lupus is also important so they realize when you need a hand. Your attitude and positively also helps with lupus that is why I like to exercise and walk a lot. I also give thanks to God firstly because my life of faith and my spiritual family is another important reason I have strength. Please be well.
Sarah Jansen
You should never feel like an imposter. The very fact that you might be a symbol of life with lupus under control is why we all need to continue to hear from you.
Kathleen D. Avery
I have often felt that way. My first lupus attack almost killed me. Four years or so after that attack the lupus went into remission. Yet, as you say, it is still present. For me, fatigue is an everyday experience. Still I rejoice that that is the only symptom along with joint pain that I have.
I too feel like an imposter in the lupus community.
Kristine
Hi Kristi,
I hear you, and I often find myself feeling similarly. I've been very lucky in that medication and lifestyle changes have made my lupus symptoms relatively mild on a day-to-day basis for the past 2 years. At times I wonder if the extreme pain and exhaustion that lead me to my doctor's office, and eventually to a diagnosis, are exaggerated in my mind. I start to think that I don't have 'real' lupus (whatever that even means), and that I don't have the right to feel bad or worry or to reach out to the rest of the lupus community. Then, a day comes by when the pain suddenly spikes or I can't get out of bed, and I'm terrified it's all starting over again. Those are the times I know I'm not exaggerating, and that even though we all experience a different symptom/progression journey, it's the emotional and mental journeys that bring us together.
Thank you for continuing to share your battle with us, Kristi. It's brave, and your progress toward remission is such good news to share!
K
Rebecca Williams
Totally get it Kristi! One can also feel like an imposter in the group trying to treat lupus with health and lifestyle, when sometimes medicine is a necessity. I find walking that line to be stressful :/
Thanks for your important column! ♥️
Christine
Hello my dear;
I like you, feel very lucky that my Lupus and related diseases are not as bad as they are for many people with Lupus. I am grateful that things are going better. However, I do still get discouraged on bad days or when a flare sneaks up on me. I feel like a big baby. So many people suffer more than I do. It does not help me to be hard on myself over this.
I have never been rejected by any other Lupi. That tells me that even though I am not suffering as much as another : I still belong. And you too belong to this club. You raise us up and support us in ways you may never know. Take heart....we still love you.