UNDER MY SKIN w/Heather Cherveny

Diagnosed with lupus after years of unanswered questions, Heather Cherveny knows what it means to live with uncertainty — and to fight for clarity. As an esthetician, she not only helps others feel confident in their skin, but also brings compassion shaped by her own experience with a chronic illness. Through chemotherapy, flare-ups, and monthly infusions, Heather continues to show up — with strength, grace, and a fierce sense of purpose.

ALLIÉ: You went undiagnosed for quite a while before finally learning it was lupus. Can you take me back to that time — the symptoms, the misdiagnoses, and how you finally got the answers you needed?

HEATHER: In February of 2018 I was very sick for 2 weeks with Type A flu, strep, and double ear infection. During that time, I ran a high fever on-and-off for five days. After getting well from the flu, my symptoms started to progress more-and-more each month, which led me down a battle of being undiagnosed for 18 months. After four different healthcare systems in Michigan as well as Mayo Clinic in Rochester, MN, nine different Rheumatologists, several monthly tests, three one-week long stays in the hospital, and $20,000 in debt; I was finally diagnosed with SLE Lupus in September of 2019 in Lansing, MI. The doctor and his team took their time and reviewed two-3-inch binders of test results, a daily health journal, family history, pictures, and physically evaluated me. Prior to that I was misdiagnosed with Adult-Onset Still's Disease (AOSD-Systemic Inflammatory Disorder), Mastocytosis, and Connective Tissue Disease. I was also made to feel like a female that was overstressed and burdened, which was causing anxiety and depression that was leading to weight gain.

I had an array of symptoms. Below are some symptoms that I dealt with daily: debilitating fatigue, weight gain-20+ pounds in 3 months (gave a bloat look), swelling/extreme edema, bloating, urinating visible blood, protein in urine, mouth & nasal sores, brian fog, hair loss, bone & joint pain, tenderness, and burning, low grade temps, felt like I had the body flu daily, hives & rashes (malar rash once in 7 years), and photosensitivity. 

I had 9 of the 11 symptoms that the American College of Rheumatology use to help diagnose lupus. However, because my ANA was positive low and not consistently positive and my blood complements (part of the immune system) were high (C3 & C4), which are normally low with lupus, I keep being told I did not have lupus and was left untreated. At one point, a physician at a hospital in Royal Oak, MI told me after looking at my blood work that my, "blood results are not credible."

After three hours of waiting in the doctor's office for him to review my files, he walked in and said, "There is no doubt you have SLE lupus, and you were a "lab rat" for many of these hospitals. It's a shame all the testing you went through when it was so obvious that you were suffering from lupus (lupus nephritis)." When I received that answer that I had SLE Lupus, my mother and I cried as it was a relief of validation. I felt heard and that I was not crazy. It was bittersweet, finally knowing that I would get help. Many times, prior to this visit, I would leave physicians' offices crying and walk down their "hallway of shame" is what I would call it having no answers, feeling I wasted my breath, and hopeless.

In 2019, I was put on Hydroxycholoroquine (Plaquenil) that made me break out in horrible hives a month into it. These hives did not resolve for 2 months and were all over my body (see image). He then prescribed me Leflunomide (Arava) a month later and eventually in February 2020 I started monthly infusions specifically for lupus, Benlysta. Benlysta has not cured my lupus or taken away all my symptoms, but has made months more tolerable until summer of 2022 when I had another lupus flare that forced me to start low dose oral chemo for 7 months. Since being off chemo, and stopping April 2024, I am trying to find my way back to what makes sense for me and the rest of my life. 

After 7 years of being sick, I am now diagnosed with the following: SLE Lupus, Fibromyalgia, Neuropathy, POTS (Postural Orthostatic Tachycardia syndrome), MALS (Median Arcuate Ligament Syndrome), HATS (Hereditary Alpha Tryptasema Syndrome), and Raynaud's Syndrome.

ALLIÉ: Living with an autoimmune disease like lupus changes everything. How has it shifted the way you move through the world — physically, emotionally, and even spiritually?

HEATHER: Lupus has completely changed my outlook on life. I used to be a complete control freak of every situation in my life as I wanted to always know my outcome. Now, I realize I am not in complete control, and I realized that after laying helplessly in a hospital bed during one of my stays. I have lost a lot due to lupus: savings, career, home, friendships, health, social life, consistency, predictability, etc.... When first diagnosed I pitied myself as I no longer knew myself. I grieved who I used to be and didn't like the new version of me. I was angry and took it out on my loved ones by lashing out and being short tempered. I was depressed and anxious not knowing what was to come for me in my future. Yes, my new doctor gave me relief with a diagnosis, but he did not prepare me for the mental stress that would follow. After a few years of bitterness, I took my life back and turned my pity into power. I did not want lupus to define me anymore! I got myself into counseling in 2021 to work on my mind and soul. I worked on my body by feeding it better nutrition, grounding myself with meditation and breathwork, walking in nature, yoga, reiki, prayer/faith, and anything that would feed my soul positivity. After being on chemo in 2022, my Rheumatologist told me it was probably best I now work part-time due to stress inducing my lupus flares. I no longer could mentally handle that stress of a "corporate world" position.

ALLIÉ: You recently went through seven months of oral chemo. That’s a lot for anyone to carry. What got you through the hardest days, and what surprised you about your own strength?

HEATHER: Losing my six-figure career devastated me and made me feel useless especially to my daughter. I have always defined myself by my status, career, success, and now I lost it due to lupus. While on chemo, I also lost my job. My family and closest friends are what keep my spirits up and get me through my hardest days. I focused on deep prayer seeking answers during a desperate time of what I should do with my life now that I had lost so much at one time. I eventually found strength to become the best version of myself. I became Reiki I & II certified during this time mainly for myself and in May of 2024 I started Esthetics school with the goal in mind to become an Oncology Trained Esthetician. All through school, I suffered with severe chemo brain fog and looking back I am shocked by my drive to not give up. I still got up every day and went to school sick, smiling, took weekly tests, and served the public while still being ill. It was so challenging, but I did it as I had a personal goal to meet and a daughter to provide for. Looking back, I am proud of myself for not giving up as the odds were against me.

ALLIÉ: As an esthetician, you're in the business of healing and helping others feel confident in their skin. How has your personal experience with lupus and skin sensitivity shaped the way you care for your clients?

HEATHER: My lupus life and now living through 7-months of oral chemo has allowed me the personal understanding of what others face that have skin sensitivity. I am now the only Oncology Trained Esthetician (OA & NCEA Accredited) in Mid-Michigan and in June I am doing additional esthetic training called Immunoesthetics with a well known doctor, Dr. Erin Madigan-Fleck, to assist my autoimmune compromised clients. In my spa room I use a clean all-natural skin line that is specifically for sensitive and compromised skin, Hale & Hush. It is formulated with botanical oils, flowers, and herbs. If there is a scent, it is natural to the product (oil/flower) in the product. They have specific products for oncology clients. I have a hospital grade air purifier in my room as I am immunocompromised, but to also keep all my clients safe. Many add-ons you have to pay for at other spas you will receive complementary with me such as the Infrared red light panel you'll receive during your facial. Any oncology client going through active chemo or radiation receives a $40 Revive & Thrive facial as the goal is to prep, hydrate and restore your skin during this challenging time. The bonus is my room is within a chemical sensitive salon, Accredo Collective, which is the only one in Mid-Michigan. The salon does not diffuse oils, burn candles, no traditional perms, no Brazilian blow-outs, no acrylics, and all products used are organic. The owner has created a safe environment for everyone to visit and have a pleasant experience. I have created affordable rates as I understand being on short-term disability with limited income and the effects medications specifically chemo has on the skin. I wanted to create a space for people dealing with these challenges that I have faced and had no one to turn to for help.​

ALLIÉ: For someone out there still waiting for a diagnosis, feeling dismissed or defeated — what would you say to them? What do you wish someone had said to you when you were in that place?

HEATHER: If you are feeling defeated, don't give up! This is from one warrior to another. I know it sounds cliche, but it is the honest truth. It will feel like the system is against you, but there is a doctor for everyone, and you just have to find your doctor AKA "medical tribe". It takes time and dedication to your health. I was told many times my case was "too complicated to take" or one doctor wrote down an exercise plan instead of reviewing that my inflammation blood markers were 8 times the normal limit or that my DSDNA was raising each visit. It is costly to find answers to your health: your time, money, and energy, but don't give up advocating for yourself. You can only count on yourself for answers. Do not waste your time on doctors that are not in your corner. You want a doctor who is going to think outside the box and willing to find answers. If they are pushing back, move on to the next doctor. Don't "park" yourself for a doctor that will not listen. Always network with other warriors by looking for Facebook sites or events that relate to your situation. Try to get involved so you don't feel alone. Find your tribe! Listen to a good Podcast or read a book to understand your new body. Do your research and try different treatments as everyone responds differently to medications. I also feel it is important to have a healthy balance between natural remedies and western medications. At this time, I take more supplements than western medications. Try to organize your documents: print all your tests that are abnormal and put them in a binder within clear sheets. Take pictures of your visible symptoms. Remember doctors see you once a month or once every three months. Keep a good health journal of your daily symptoms or when you are not feeling well. An involved doctor will want to review this information. Also, write down all failed medications, doctors you visited & outcome, major tests you have done (i.e. biopsy), have access to all patient portals, and a written history of yourself with your timeline and family medical history.

ALLIÉ: For sharing so much of your journey, thank you, Heather. Is there anything more you’d like to say?

HEATHER: I want to give special thanks to my mother, Jackie, and Richard, for being at several appointments with me that last 7 years. My daughter, Shealynn, for supporting me at Lupus Walks by volunteering and trying to understand my disease a little more each year. I know it has been hard on you, and I appreciate your love. My closest family and friends for checking on me and being there for me. My boyfriend, Jason. He has been a rock the last 3 years. 

May is Lupus Awareness month. Sharing my story is important to me as there are people in my shoes too timid to share their story, or for those that are fighting for a diagnosis and feel in their soul they have lupus. ∎

Find & follow Heather on Instagram:
@heather.cherveny