Caregivers are the unsung heroes of the rare disease world

Note: This column describes the author’s own experiences with Soliris (eculizumab). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.

Raising children, maintaining a household, cooking meals, grocery shopping, paying bills, working, and the daily complexities of life can strain relationships and the home dynamic. Families may face challenges such as drama, scheduling and time management issues, blending multiple households, and disagreements. But what happens when rare diseases, medical complications, and comorbidities enter the picture?

In September 2020, I nearly died from multiorgan failure caused by a rare disease called atypical hemolytic uremic syndrome (aHUS). My body was permanently deconditioned due to all of the organ damage I experienced. My kidneys, liver, heart, and uterus were the most affected, and I needed a hysterectomy in July 2021. I also developed numerous comorbidities that I still live with today.

Living with a rare disease is stressful, to say the least. I always feel ill to some degree. And I have additional health complications, including hypertension, stage 4 chronic kidney disease, hypertrophic cardiomyopathy, May-Thurner syndrome, osteoarthritis, and daily side effects from Soliris (eculizumab), my aHUS treatment.

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The impact on our caregivers

These issues can be stressful for any caregiver, whether it’s a spouse, partner, parent, or medical professional. A terrifying medical experience can, of course, be traumatic for the patient, but our partners and caregivers also experience trauma that many people don’t talk about. Even my closest friends worry about my well-being and get nervous when I’m facing an illness, a new health issue, or a procedure.

I assume that many caregivers and partners feel a sense of helplessness regarding their loved one’s illness. It must be frustrating to watch someone suffer and be unable to heal them.

My fiancé has told me that he’s experienced fear, particularly when I’ve faced severe, uncontrolled spikes in blood pressure, extreme pain from complications, surgeries, and rough side effects following a Soliris infusion.

Each time I have a health scare, he feels a pit in his stomach. The nervousness is so intense it makes him queasy. Anxiety makes him unable to focus or breathe smoothly. He’s been truly scared for my life on several occasions. Partners and caregivers can absolutely experience post-traumatic stress disorder (PTSD) related to a loved one’s medical issues.

I like to think that my fiancé was “trained” to deal with my illnesses. He lost his daughter due to complications of cystic fibrosis when she was 27 years old, and he was her primary caregiver for the first 18 years of her life. When I considered dating him, I had two main questions: Could he handle my children, and could he handle my illnesses?

I won’t pretend that it’s easy to deal with someone who is always sick. I have good and bad days, but the longer I live with my illnesses, the more my health declines. Most people don’t enter relationships with the plan of becoming a caregiver to that person in their 30s or 40s.

But I figured if he was crazy enough to be with me, then he must have been the total package. He’s a great father, he’s familiar with rare and chronic illnesses, and he understands when and why I have hard days. He is patient, understanding, considerate, and so much more. He reminds me to drink more water, to rest and not overdo it, and to conserve my energy for important things. He truly wants the best for me and can see right through my “tough girl” facade.

Caregivers can be tested and pushed to the brink. They may deal with fear, stress, frustration, anxiety, and even PTSD. Patience and communication are two of the most important aspects of the patient-caregiver dynamic. It’s crucial to talk openly about our needs, fears, and challenges.

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.