I try to be patient when others don’t understand my invisible illness

I make short, feathery strokes with a dark brown eyebrow pencil. Then I apply two carefully guided, wet swipes with black eyeliner glue. Next come three rows of 3D eyelashes, combined and cut to fit my large eyes. Finally, I affix a long and layered dark brown wig with a tightening strap and combs that hook to the small patches of hair I have left. Every morning, I do all of these things to hide my invisible illness before leaving the house.

My fiancé once captured it best with something he said. I was in the bathroom at the time without my makeup on. I was changing from my “around the house” hair to my long, layered, curly hair so that we could go shopping. My head is riddled with bald patches, thin sections, and brittle, crunchy hair that’s chemically damaged and vitamin deficient.

“I really can’t tell that you’re sick until you’re just yourself at home — no eyebrows, no eyelashes, patchy hair,” he said. “It’s amazing how well you hide it from the world.”

I looked in the mirror to give my unfiltered appearance a once-over. I looked rough. My rare disease and the resulting chemotherapy are slowly trashing my body.

Recommended Reading

March 8, 2021 Health Insights by Brian Murphy, Ph.D.

Talking to Your Employer About aHUS

Permanently sick and weak

In September 2020, I was admitted to the intensive care unit with a grim diagnosis. I’d been declining in health for months, with several seemingly unrelated symptoms that appeared after an asymptomatic bout of COVID-19. I’d attributed them to just being overworked and run down. But when I started vomiting blood and losing feeling in my legs, I knew it was time to go to the hospital.

My medical team informed me that my body was failing on an epic scale. I was in active kidney and liver failure. My heart was enlarged, and I’d had a ministroke. I had hemolytic anemia, another scary symptom in which my blood was being destroyed faster than my body could produce it.

After five weeks of back-to-back dialysis and plasmapheresis, I was diagnosed with a rare disease called atypical hemolytic uremic syndrome (aHUS). I have the disease due to a rare gene mutation, and my battle with it likely will continue for the rest of my life. The treatment for it is immunosuppression, in my case, with Soliris (eculizumab).

Most of the damage to many of my organs is irreversible. Luckily, after five months of treatment, I was able to come out of end-stage renal failure. My kidney function now hovers between 14% and 20%, which leaves me with stage 4 chronic kidney disease.

Add to that the side effects of treatment, anemia, severe hypertension, May-Thurner syndrome, periodontitis, lost muscle mass, and lupus (which I had before aHUS), and I’m permanently sick and weak.

All of these issues make even walking a challenge, as it causes cramping and swelling in my legs. Exercise is nearly impossible, and climbing stairs is a nightmare. I can’t even make it to the next gate at an airport without assistance. It’s hard to get off the floor or pull myself into a standing position from a chair or a stool.

But I don’t look sick. I go shopping, pick up my kids from school, run errands, and so on. I even purchased a new wardrobe last year to help with my self-esteem and distract from my illness.

Unbeknownst to everyone around me, I hide it all very well — so well, in fact, that I constantly struggle to meet the expectations of others who don’t understand my challenges. Having an invisible illness is hard.

I’ve learned that I invest a lot of time and energy into not appearing sick. I take the lack of understanding by others as a compliment and a testament to my makeup and fashion skills. Every day, I try to be more understanding to people who don’t fully understand me and my invisible illness.

Note: aHUS News 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 aHUS News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to aHUS.