A ‘glow-up’ is just the boost I’ve needed in life with rare diseases
Looking better on the outside helps me feel better on the inside
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Living with several rare and chronic illnesses is one of the hardest things I’ve ever faced. I currently live with lupus, Ehlers-Danlos syndrome, immune thrombocytopenia (ITP), thrombotic thrombocytopenic purpura (TTP), and atypical hemolytic uremic syndrome (aHUS). These conditions bring a slew of lifelong comorbidities and complications, ranging from small and mildly annoying to dangerous and potentially fatal. Throw in strong medications that cause their own side effects, and the struggle is never-ending.
I was diagnosed with aHUS, which I consider my primary illness, in the fall of 2020. An asymptomatic bout of COVID-19 activated an ultra-rare gene mutation that affects my immune system. Pair that with ITP and TTP, and my immune system now attacks and destroys my red blood cells, platelets, and plasma. I’ve even developed blood clots in my organs, which have permanently damaged my kidneys, liver, heart, and uterus, resulting in a hysterectomy.
While living with so many extreme medical issues, it’s hard not to get lost in a sea of doctor appointments, medications, insurance battles, surgical procedures, and so on. Plus, my diseases have changed my body and abilities in many ways.
It’s hard not to be consumed by the depression, anxiety, uncertainty, frustration, guilt, loneliness, and anger of feeling like my body has betrayed me. While I have more good days now than I did at the beginning of my journey, I still have bad days often. I feel sick, weak, or awful to some degree nearly every day. One of my doctors said it best: I’m “always living on the cusp of terminal illness.” I look fine on the outside, but my lab work tells a very different story — one that terrifies and impresses any new doctor reviewing my case.
Because of the toll this all takes on my mental health, I’ve had to get creative to distract myself from my impending doom. I have two active “tween” boys and a fiancé who depend on me each day, so I have to rein in my sadness and frustration. Lately, I’ve been working on a “rare disease glow-up.” I’ve noticed that looking good not only masks how crappy I feel, but the compliments I receive boost my serotonin and dopamine, the feel-good hormones.
Small changes can make a big impact
My glow-up is still underway, but I’m making progress. Because I’ve lost my hair — including eyebrows and eyelashes — due to aHUS treatment, I recently got my eyebrows tattooed, which saves me from drawing them on every day.
Next is clothing. I swapped out most of my leggings and sweatshirts for summer dresses. This simple change has completely changed my daily adventures. Now, I receive several compliments about my appearance every time I go out. I’ve also begun wearing eye makeup again, because I look especially weak and sick around my eyes.
I’ve also swapped out most of my shower and self-care products for higher-quality options that help my dry skin, which is also affected by my aHUS treatment and lupus. It’s a few extra steps, but I feel so much better afterward.
Next on my agenda is having facials done regularly, starting a gym membership, and doing more things outside. The sun and fresh air make me feel a lot better.
These changes may not sound like a big deal, but they’re already making a huge impact on my daily life and mental health. People have commented on the difference in my appearance and interactions. This glow-up has absolutely been worth it, helping me to find and create my own joy.
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.
Helen Schofield
My grandson was diagnosed with aHus almost 2 years ago. It literally came from nowhere. It's taken a while to come to terms with it but he's now a beautiful active 7 year old and the bravest person I know