Finding resilience in diagnosis after diagnosis

I never imagined my life would revolve around medical terms. It is a tapestry woven from pain charts and a rapidly expanding binder of test results. Yet, here I am, at the end of summer of 2025. I am reflecting on my journey. It is marked not only by survival. It is also defined by a persistent search for meaning, relief, and hope.

Chronicle of Diagnoses: From COVID to Cancer to Cataracts

My health story starts in the shadow of a pandemic. Shortly after shut down in March 2020 I was diagnosed with diabetes. Between 2020 and 2022, I contracted COVID-19 four times. One of those rounds was not just inconvenient. It was severe. It left me with migraine headaches that looped on a daily cycle for nine agonizing months. Each morning, I woke to the drumbeat of pain in my skull. Every evening, I fought for sleep through the haze of discomfort. My experience was still a better outcome than my brother, Larry. He died from COVID-19 in March of 2022.

From March to June of 2023, my world shifted yet again when my sister, Becky, lost her battle with pancreatic cancer in eight short weeks. The grief was raw and consuming. Two months later, I received my own diagnosis: invasive ductal carcinoma, stage 2, grade 3. Breast cancer. Cancer, it seemed, wasn’t done with my family.

The subsequent year was a blur of surgeries, chemotherapy, and radiation therapy. I still swallow oral medications daily, each one promising to keep the threat at bay, while side effects dance around me in unpredictable ways.

Just when I thought I might see the horizon, June 2025 brought another surprise – rapidly growing cataracts and closed angle glaucoma, direct consequences of treatment. My vision, once reliable, now fluctuates between clarity and blurred cloudiness like a fickle summer sky. I’m now on the other side of my second eye surgery and healing well.

Enter Hidradenitis Suppurativa: The Diagnosis No One Saw Coming

It was during a routine checkup last April with my oncologist, reviewing the constellation of scars and skin changes, and other side effects from my cancer treatments along with new lumps that had appeared under my arm and in my groin that had appeared in late March. At first, I thought the painful lumps and inflamed skin was a breast cancer recurrence or metastasis. Still dealing with side effects, I felt overwhelmed with the thought of possibly more surgeries, chemo, and whatever else may be thrown at me. Fortunately, my oncologist didn’t think it was cancer, but she didn’t know what it was and directed me to my PCP.

I went to my PCP who gave me an antibiotic and stressed that anything at all that comes up new for me that is unexplained that I need to get into see her immediately. I’m high risk now that I’ve had cancer. She also directed me to see my dermatologist if they come back.

I started to heal with the antibiotic but not fully. The ones under my arm while better are still there. Then I got another lump on the other side of my groin. It became huge and so painful. I couldn’t sit. I made an appointment with the dermatologist. Before I got in there, I had to lance it. I’ll forego gory details and photos I took. They all had grown, multiplied, and began to restrict movement and the pain was just awful.

So by then it’s August 2025 and that is the first time that I first heard the term Hidradenitis Suppurativa. I was not totally convinced that I had this rare incurable autoimmune disease. I was still worried that this may be a new cancer – a risk I live with due to having chemotherapy and radiation, or a recurrence.

After tests and imaging at the breast center, the diagnosis the dermatologist gave was confirmed: Hidradenitis Suppurativa (HS), an incurable autoimmune disease affecting sweat glands and hair follicles, leading to painful abscesses, tunneling sores, and chronic inflammation.

Like I needed something else awful to deal with.

Symptoms and Daily Life

HS is relentless. It brings with it the burden of pain, swelling, and drainage – often in places that make it hard to walk, sit, or even rest comfortably. The symptoms are unpredictable; some days, it’s a dull ache, other days a sharp, searing reminder of my body’s rebellion. The emotional toll is racking up – embarrassment, frustration, and isolation. And the healing is slow.

I’m new to this so I’m still figuring it out.

Treatment Plans and Hope

My treatment plan for HS is now a carefully balanced regimen: antibiotics for acute flares, topical antibiotic gel, and intense wound care. Biologics are on pause because that will have to be coordinated with my oncologist, since they compromise the immune system and have their own nasty side effects. I’m already immune compromised from my cancer meds. I am learning to become expert at bandaging and at deciphering the language of inflammation. I understand that surgery is sometimes a last resort, but my body, still recovering from cancer and its treatments, is hesitant.

So far I’ve learned the importance of gentle movement, dietary adjustments, and seeking psychological support. Each health setback has taught me something new about my own resilience, but HS demands a daily re=calibration of hope.

The Emotional Landscape: Navigating Loss and Chronic Illness

Losing my sister to cancer set the tone for this part of the journey. Grief mingles with the exhaustion of managing multiple chronic and now incurable illnesses. The question I ask most often is: How do I keep going? The answer, I’ve discovered, is through community, information, and small acts of self-compassion.

There are days when the weight of it all feels insurmountable. But then I remember that each diagnosis is not the end, but a chapter. I am not just surviving – I am living, even if that looks different than I once imagined.

And I am lucky. I have a great support system personally and professionally.

Resources That Have Helped Me – and Might Help You

• Hidradenitis Suppurativa: HS Foundation (hs-foundation.org) – comprehensive info, community forums, treatment guidelines
• COVID-19 and Long COVID: CDC COVID-19 Resources (cdc.gov/coronavirus) and Long Covid Alliance (longcovidalliance.org)
• Chronic Migraine: American Migraine Foundation (americanmigrainefoundation.org)
• Breast Cancer (Invasive Ductal Carcinoma): Breastcancer.org (breastcancer.org) and American Cancer Society (cancer.org)
• Pancreatic Cancer (Grief Support): Pancreatic Cancer Action Network (pancan.org) and Cancer Support Community (cancersupportcommunity.org)
• Cataracts and Glaucoma: American Academy of Ophthalmology (aao.org)
• General Chronic Illness Support: Chronic Illness Peer Support (chronicwarriors.org)

I hope these resources offer you the same glimmer of support and connection they’ve given me. If you, too, are living with layers of illness and loss, know that you are not alone. There is strength in sharing, and there is hope in knowledge – even when the path ahead is uncertain.

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