‘There’s a woman who posts beautiful things, and the one I come home to, who ISN’T okay.’ He accused me of being a fraud.’: Mom diagnosed with Lupus, multiple chronic illnesses, ‘We’re worthy of living our best lives’

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“Pull up a chair and stay a while, because to tell you anything about living life with chronic disease is to tell you everything. It is for you to wear my entire life on your sleeve. After we part, I don’t know what you’ll do with that sleeve…who will see it and where the two of you will go. But you’ll be carrying with you a piece of me. Are you ready for it? My name is Jennifer, and I have lived with chronic disease my entire adult life—and for a large part of my childhood. Sometimes I think, had I been born 100 years ago, I would be bedbound all days instead of some… if not dead. There is a big possibility I would be the background noise of almost every Disney movie. Movies of children without mothers. But I am here. I am with them. For this, I give thanks. Because of this, every single day on earth is a miracle.

Courtesy of Jennifer Magnano

And also, here—living life with chronic disease—everything is gray. I can honor this most days… most days. I’ll start my story here: as a chronic disease warrior, almost every virus within distance has graced me with a dance. As a child, I missed a lot of time at school. My body didn’t just respond poorly to viruses, though. It couldn’t handle most antibiotics, either. So, healing each time took a long time. And then out of the blue came pain: lightning bolts in my joints—my ankles, knees, low back, hips. We spent a lot of time with my rheumatologist at Boston’s Brigham Women’s and Children’s Hospitals. I wish Dr. Jackson was still here so I could thank her. Not because we received much of a treatment plan beyond pain meds, but because she treated me with compassion, kindness, humor, and grace. Even without knowing exactly what caused my troubles.

Courtesy of Jennifer Magnano

Because we could never get a formal diagnosis, my mother introduced me to yoga and natural medicine. Both became not only a part of my walk, but the foundation for my periodic relief from disease to this day. In my teen years, those troubles increased when I caught mono. Within a year, I was diagnosed with complex partial seizures, migraines, food allergies, and a rare blood clotting disorder. Around that time, I had a complication after a routine tonsillectomy. There was a nun sitting in the hallway as the nurses rushed me off to repair a bleed in my throat…she prayed for me, and I thought, ‘This is the end.’ I was scared to death. And then—as if this was not enough—the joint pain spread to my hands, the seizures left me without my driver’s license, I resolved to leave my pre-med major (my long-term goal had been to become a veterinary surgeon), and my fifteen-jobs-in-fifteen-years adventure began.

Courtesy of Jennifer Magnano

Since we’re sitting here together, I invite you to consider how you would respond. Did you have a backup plan? Do you now? Can you even work? Lots of people with my disease cannot. Side note: I love you, people like me. I really, really love you.

A bright light in this journey has been my partner. We met when I was 21 and he was several years older. With so much ‘life experience,’ dating college boys wasn’t working out for me. They rattled on about the latest and greatest in college existence, and I stayed home with a portable EEG machine glue-taped to my head. With Scott, I was quick to share my atypical health journey. On the outside, I look quite healthy most days. But he quickly got to see the real me. And for the last fourteen years, he has continued to see the real me. There is nothing but real left.

Courtesy of Jennifer Magnano

Flash forward to our real moments together. The month we moved in together, I found lumps in both breasts and multiple lymph nodes. I was diagnosed with Lupus. The seizures came back just before we got married. The complicated pregnancies. The critically ill baby I cared for while sick myself. The special needs child who blessed us with her sweet light—and then slaughtered me with her inability to function or sleep without mama’s presence and love. And even with it often… no sleep. The mosquito-borne virus. The cancer. And in and among it all, me trying to figure out, ‘Who am I here?’—as an intellectual, an academic, a woman madly in love with both work and life. To be absolutely clear, I could not have done the last fourteen years without my husband. I do balk at the idea of being cared for, even now, but he’s amazing at taking care of me. From reminding me my health matters, to placing online orders when my brain is too scrambled, to physically carrying me to bathe, he’s my rock.

Courtesy of Jennifer Magnano

Scott also embraced the multitude of career paths I tried early on; he has loved me even as my heart has often lived somewhere else—saving the world, much to my body’s displeasure. My body and my mind were definitely out of sync for a while. Because time after time, I would feel better for ‘just a short while’ and my blinders would go on. Like the time while caring for our critically ill babe when I decided to apply to nurse practitioner school and then—a few months into the program—my back gave out. I was working on a research project on neonatal immunology. I thought, finally, I’m going to be where I want to be. But I herniated my L4/L5 disc and lost feeling to my left leg. I missed my son’s first birthday because it wasn’t a straightforward—and it took months to get an answer on why I wasn’t healing. One doctor tried to tell us I made it up, and I was really fine!

Courtesy of Jennifer Magnano

Another said there was a good chance I was experiencing early signs of ALS or MS. The never-ending dichotomy of conclusions were devastating. The conversations compounded my experience with postpartum depression and anxiety. But with a new babe to care for, I didn’t give up. In the end, six months of physical therapy and therapeutic yoga left me with 95% nerve and muscle function in my leg. And while I still drag my toes and trip from time to time, I’m so thankful I can walk. I’m also thankful for my people. My best friends who drove across two states to care for my baby while I was in the hospital. My mother-in-law who helped so much. I don’t know that everyone gets to experience this kind of selfless love. But I want you to know this: it exists. It really does. There are incredible humans who want to walk alongside of you. Some physically, some virtually.

Tami Cards

The virtual part has really blown my mind. I left nursing school to focus on supporting maternal mental health through yoga and writing, and to heal in 2011. When you have a young child and you’re sick (a lot), I feel like your perspective probably changes. Mine definitely did. I wanted to spend as much time as possible with my son… so I did. I also wanted more kids. So, I put my blinders on to chronic disease once more and went for it. I began contractions at nineteen weeks pregnant and was on bedrest for the last eight weeks of my pregnancy. I did get to have my first ‘healthy’ baby! Still, two things happened: my medical bills kept piling up, and my daughter was born a not-so-easy child. I refer to her as my Wild. Over the last few years, she has been diagnosed with severe OCD and sensory processing disorder. From the time she was born, it was hard to do anything other than nurse her, wear her, and sleep… with her!

Courtesy of Jennifer Magnano

I remember Scott came home one day to an absolute disaster of a wife. I had spent half my day crying because I felt so very sick and exhausted—and the other half coloring with our two small children in my bed. He looked me square in the eyes and said, ‘I feel like there are two different people. There is the woman who writes and posts beautiful things—and then there is the woman who I come home to… who is not okay.’ It felt like a punch in the gut. My husband had basically accused me of being a fraud! But after so many years of being sick and not saying anything, I knew he was right. I wasn’t being true to myself. I had to say something. And I did. From this point onward, I have had a gorgeous virtual community. I even joined a direct sales company for a bit, built a six-figure health coaching business from my bed using the wealth of knowledge I’ve gained, and I paid off those bills.

Courtesy of Jennifer Magnano

Again, I thought I found a career path I loved. But I didn’t have healthy boundaries, and I have a disease that does. If I push myself too hard, I never know what will come up… and what came up next wrecked me. In 2015, I joined a dozen other women off the coast of Florida for a retreat. There was food, fun, prayer, and tons of mosquitos. I returned home with Dengue Fever, and my body and mind crumbled bit-by-bit, day after day. I hallucinated for weeks, lovingly referred to my hands as ‘pain mittens,’ experienced new, problematic infections from head to toe, and enjoyed more migraines and insomnia. To get to our bedroom I crawled up the stairs each night. But finally, I ended up with an official diagnosis: chronic fatigue syndrome (CFS/ME). Back in physical therapy, re-learning how to walk once more, I was told I qualified for disability.

Courtesy of Jennifer Magnano

By God’s grace and answered prayers on behalf of friends around the world, I graduated from physical therapy three months later 93% ABLE. The worst was over, though, right? Well, no. My mental health was at an all-time low. The migraines and pain persisted and kept me from being at my phone or computer for more than a few minutes at a time. So, I walked away from my business. My once-eloquent words now floundered and flopped any time I attempted to write. The pressure at home was enormous, too, with my daughter’s new diagnoses and therapies. She rarely—if ever—slept. These were some of the darkest moments of my life. I was a mother who was too exhausted to mother, a creative who could not create, and a woman on fire to serve, unable to.

Courtesy of Jennifer Magnano

While praying for complete healing and restoration, I found death instead. In 2017, I was diagnosed with melanoma, thanks to a dear friend who passed from it. Chronic fatigue syndrome is a neuro-immune disease, and the doctors believe it found my stage 1A melanoma before I did. CFS/ME attacked my body—all of it—full force. In and out of the nearest ER frequently, I ended up with two more diagnoses: Crohn’s disease and eosinophilic asthma. My only request of God—of life—at this time was to see my babies grow up. Three years later, just writing this makes me bust out in a (exhausted) grin. I love my babies. So much. So big. And I’m seeing them grow up.

Courtesy of Jennifer Magnano

Right now, I’m cancer free—but I have not ‘healed’ in the broad sense of the word. I like to say ‘acceptance is bliss,’ because for me it is. I have happiness here and now. I have a pretty great toolbox and good doctors. I spend time in nature as much as my body allows. I practice restorative yoga and meditation and breathing and prayer every single day. I see a therapist when I feel my mental health get out of whack. I spend extra time just resting in bed when I can—often even when I ‘can’t’—because I must. And I am really, really honest with the ones I love—as well as my virtual community. I have happiness here and now… YES. I love life. I love it so much!

Courtesy of Jennifer Magnano

On my good days, I write, work, and serve again. This year I will publish my first children’s book in a series dedicated to diverse and challenging life events. I run a small maternal-child mental health ministry. And—alongside a collaborative of supportive women—I get to care for postpartum moms. I’ll end with this…

Courtesy of Jennifer Magnano

Everything is gray here and that’s okay. I am learning to live in the gray. I am learning to love myself and others well in the gray. And I am learning how to serve well here, in the gray, too—because of an empathy I would have never known without chronic disease. Friend, we are better together, we are worthy of living our best possible lives here and now, and we are made for so much more than we know even in the gray.”

Tara Lund

This story was submitted to Love What Matters by Jennifer Magnano of Phoenix, Arizona. You can follow her journey on her Instagram, her newsletter, and her website. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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