What It’s Really Like to Have Lupus: Here’s How I Found Wholeness and Hope
Key takeaways:
Growing up, Marisa Zeppieri had ailments she considered to be part of a mysterious illness.
While studying nursing in college, she received a lupus diagnosis, which explained what she has been living with for years.
It took even longer for Marisa to accept her chronic condition and find strength.
My Journey is a series of personal essays about what it’s like to cope with a medical condition.
“Your self-worth is not dependent upon your ability to perform, Marisa.” It’s a statement I repeated to myself hundreds of times in the years after I was diagnosed with lupus, a lifelong autoimmune and inflammatory disease. But for a variety of reasons, what my heart was sensing and what my brain was saying felt light years apart.
I knew I was not like everyone else from the time I was 8 years old. While my friends swam for hours in the warm, salty waters of South Florida, or rode their bikes around palm tree-lined neighborhoods until the sun signed off for the night, I was sitting at home. Daily fevers, hair loss, rashes, breathing and heart issues, and relentless fatigue kept me inside. No matter how many hours of sleep I got, my after-school routine consisted of naps, medication treatments, and doctor visits.
No one suspected lupus. Doctor after doctor brushed me off as “a delicate child,” having “bad allergies and asthma,” and “needing to eat more.” I was never appropriately tested for any autoimmune disorder, even though symptoms were clearly visible on my skin and literally staring others in the face.
Life with a mysterious illness was my norm
And so, I moved forward with life and these ailments. By college, I had adapted in many ways to the maladies that plagued me. I learned that the Florida sun seemed to set things off, and hats and long sleeves were a necessity. I needed at least one nap per day to somewhat function.
Even though I knew it would be a challenge physically, studying to become a nurse in college seemed like the right fit. I spent most of my life in hospitals and doctors’ offices, and I had a deep desire to help people who were hurting.
During my final rotation semester, my life dramatically changed. A small stroke and pulmonary embolism stopped me in my tracks.
Looking to save on BENLYSTA (belimumab)?
BENLYSTA is for people 5+ with active SLE (lupus) or active lupus nephritis on other lupus medicines. Not for people with severe active central nervous system lupus.
Do not use BENLYSTA if you are allergic to belimumab or any ingredients in BENLYSTA.
The most important information about BENLYSTA
Immunosuppressive agents, including BENLYSTA, can cause serious side effects. Some of these may cause death.
• Infections:
fever, chills, pain or burning with urination, urinating often, coughing up mucus, or warm, red, or painful skin or sores on your body. Infections could be serious, leading to hospitalization or death.
• Allergic (hypersensitivity) reactions:
itching, swelling of the face, lips, mouth, tongue, or throat, trouble breathing, anxiousness, low blood pressure, dizziness or fainting, headache, nausea, or skin rash. Serious allergic reactions can happen the day of, or in days after, receiving BENLYSTA and may cause death.
• Mental health problems and suicide:
thoughts of suicide or dying, attempt to commit suicide, trouble sleeping (insomnia), new or worse anxiety or depression, acting on dangerous impulses, other unusual changes in your behavior or mood, or thoughts of hurting yourself or others.
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Possible side effects of BENLYSTA
• Progressive multifocal leukoencephalopathy (PML). PML is a serious and life-threatening brain infection. PML can result in death or severe disability. Tell your healthcare provider right away if you notice any new or worsening medical problems: memory loss, trouble thinking, dizziness or loss of balance, difficulty talking or walking, or loss of vision.
• Cancer. Medicines that affect the immune system, including BENLYSTA, may increase your risk of certain cancers.
The most common side effects of BENLYSTA are nausea, diarrhea, fever, stuffy or runny nose and sore throat, persistent cough, trouble sleeping, leg or arm pain, depression, headache, and pain, redness, itching, or swelling at the site of injection (when given subcutaneously). These are not all the possible side effects of BENLYSTA. Call your doctor for medical advice about side effects.
Please see Prescribing Information and Medication Guide for BENLYSTA.
What is BENLYSTA?
BENLYSTA is a prescription medicine used to treat people 5 years of age and older with active systemic lupus erythematosus (SLE or lupus) or active lupus nephritis (LN) (lupus-related kidney inflammation) who are receiving other lupus medicines. It is not known if BENLYSTA is safe/effective in people with severe active central nervous system lupus.
It is not known if BENLYSTA, given under the skin, is safe/effective in:
• children with SLE under 5 years of age or weighing less than 33 lbs
• children with LN under 18 years of age
It is not known if BENLYSTA, given in a vein (intravenously), is safe and effective in children less than 5 years of age.
BENLYSTA IV is available as 120 mg in a 5-mL single-dose vial and 400 mg in a 20-mL single-dose vial. BENLYSTA SC is available as a 200 mg/mL single-dose autoinjector and prefilled syringe.
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My saving grace was that I was in the midst of a medical/surgical hospital rotation when the blood clot decided to travel up from my lower leg, and I was rushed to the emergency room. The culprit: systemic lupus.
It can take years to get an accurate lupus diagnosis
Systemic lupus erythematosus (SLE) is a chronic, inflammatory autoimmune disease that affects more than 5 million people worldwide. It can take an average of 3 to 6 years to receive an accurate diagnosis.
It is often said in the lupus community that no two cases are exactly alike. But most people have foundational symptoms such as the fatigue, sores, rashes, hair loss, sun sensitivity, blood issues, and breathing problems that I had lived with for most of my life.
The word lupus means “wolf” in Latin. The disease is aptly named because it resembles a predator. It’s not only skilled at eluding others, but also attacks with an aggression and relentlessness that can be unexpected and life-altering. Lupus worsened in my body for many years, with no medications or lifestyle changes to help dampen it. So when it wanted to make its presence known, it did so fiercely.
Literally overnight, I lost the nursing career I had worked so hard to achieve. I spent the next few years of my mid-twenties in and out of the hospital, rehabs, or recovering at home with my family. I survived multiple small strokes, heart enlargement, lung issues, countless infections, vasculitis, and a brain aneurysm.
While I had dreamed of graduation day and working with the Mercy Ships or an overseas mission organization helping those in need, I instead waited patiently in my bed at home for my nurse and physical therapist to arrive each day to help me bathe, eat, and complete a short string of exercises.
Chronic illness leads to emotional overload
There is an incredible sense of loss when you are deep in the valley of a chronic illness. Life buzzes around you. People seem so purposeful, and yet your day is focused on just surviving.
Life doesn’t hit the pause button and patiently await your recovery. And recovery in a complete sense may never happen, especially with diseases like lupus that have no cure. Bills need to be paid, friends innocently ask whether you’re better yet, and society quietly imposes pressure on you to do your part.
While I was grateful that I had a patient and compassionate family that helped me through the physical phases of recovery, my mental health suffered greatly. People living with chronic illnesses can often battle feelings of shame and not being “good enough.”
Emotions bubble up when we think that we’re not living up to what we perceive as others’ expectations or we face our own disappointments. Sometimes, we have feelings of inadequacy when we watch others achieve their dreams while we feel stuck. Or we could be hurt by well-intentioned comments people make about our progress. These feelings are real. And the damage they inflict can take years to process and undo.
Learning to love my body again
My late twenties consisted of learning how to navigate my new normal, take part in intensive therapy and support groups — and honestly, fall back in love with myself and my body. I figured out what I was realistically able to do each day.
For so many years, I felt angry and betrayed by my body. Today, I make decisions with my body and health in the forefront of my mind. But this was only possible because I took part in a variety of healing activities.
I see now how much my body tries each day to keep up with its internal struggles. It has fought so hard for me and survived so much in such a short span that I want to fight equally as hard to protect it at all costs.
And speaking of fighting, while I was always outspoken and spunky in my youth, chronic illness has shaped me into a fighter in a different sense. I’ve spent the last 15 years fighting to help people in similar situations. I want to reach people who find themselves in the same position I was in decades ago: horribly ill, undiagnosed, and overwhelmed with a fear of what is going on in their body and how they can get back to living.
I started my nonprofit, LupusChick, in 2008 as a source of information, education, and daily tips for anyone who is living with a chronic and debilitating illness. Today, we reach almost a half million people per month and just gave away our eighteenth college scholarship to someone living with lupus. Our work was even featured as the thirty-fifth chapter of Lady Gaga’s recent anthology, “Channel Kindness.”
As a writer and a speaker, I’ve always looked for platforms to connect with people about living with chronic illness and resiliency. In 2018, during my reign as Mrs. New York Universal, I worked with government officials to educate communities about lupus. And in 2021, I released my memoir about how I found wholeness and hope.
I believe we instinctively know from a young age where our natural gifts lie. I knew I wanted to be of service to others. While I thought it would be through nursing, I clearly see today how I still help people by sharing my experiences and knowledge, and helping them navigate the journey before them. No one should have to walk the chronic illness path alone.
Overcoming shame and finding your superpower
There is no doubt that each trial we face in life shapes us. I believe these obstacles bring out the deeper layers within us. Each challenge illuminates what we need to come to terms with and heal. Trials can refine us — despite our kicking and screaming — and prepare us to use the experience.
No matter where we are in our chronic illness journey, there is someone out there who is in desperate need of the knowledge, experience, and support only we can offer. And while your path in helping others may not involve writing like mine did, it might involve using art, speaking publicly, or influencing the medical community.
For those of us living with a chronic illness, I think it is crucial that we begin seeing ourselves in a new light. We are defying the odds and bouncing back from turbulent seasons. We are adapting to problems and finding new ways to communicate with the medical field. We are advocating for ourselves, using our experience as a superpower rather than a source of shame.
It is only by focusing on how much I have grown and overcome — how much I have helped others by sharing my truth versus what I have lost to this illness — that I have been able to shine brighter than a disease that would love nothing more than for me to sit silent in the dark.
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