Relationships are hard. Couples may face many challenges, such as family drama, scheduling and time management issues, the blending of two families, and disagreements. But what happens when a rare disease, medical complications, and comorbidities enter the picture?
In September 2020, I almost died from multiorgan failure caused by the rare disease atypical hemolytic uremic syndrome (aHUS). I endured 18 blood transfusions, dialysis, meningitis vaccines, plasmapheresis, chemotherapy (which I still receive), and much more.
Living with a rare disease is stressful, to say the least. I always feel ill to some degree. And I have several rare and unique complications, including hypertension, hypertrophic cardiomyopathy, May-Thurner syndrome, osteoarthritis, and several daily symptoms from eculizumab, the chemotherapy drug that helps me stave off a relapse.
Navigating relationships with a chronic illness
Naturally, these daily issues can strain a relationship. Going through a terrifying medical experience is 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 experience an illness or new issue.
I assume that many caregivers and partners feel a sense of helplessness regarding their loved one’s illness. To watch someone suffer and be unable to administer a medication or treatment that’ll make them better must be frustrating.
I’ve had a partner tell me that he’s experienced several moments of fear, particularly when I’ve faced severe, uncontrolled spikes in blood pressure, extreme pain from cycle complications, surgeries, and rough times immediately after chemotherapy.
Each time he felt a pit in his stomach. Nervousness so intense it made him queasy. Anxiety that made him unable to focus or breathe smoothly. He was truly scared for my life on several occasions. Partners and caregivers can absolutely experience post-traumatic stress disorder from a loved one’s medical issues.
Health complications can also affect intimacy. Extreme fatigue, chronic pain, medication side effects, hormonal changes, and severe menstrual cycle changes may hinder or completely prevent it.
In my case, my uterus was severely damaged during my initial aHUS attack. But we didn’t know the severity until I began receiving heparin during outpatient dialysis. It triggered a menstrual cycle that lasted more than nine months. That, along with constant cramping, migraines, and nausea, completely shut down any chances of intimacy for me.
Months of medications and hormone changes led to anxiety and worsening uncontrolled pain. And I had to attend multiple doctor appointments for invasive, traumatic, and painful exams and procedures. In the final six weeks of this ordeal, I gained 50 pounds. The rapid weight gain affected my breathing, blood pressure, stamina when walking, and self-esteem, pushing me into a deep depression.
All of these consequences finally culminated in a hysterectomy in July 2021, which removed my uterus, cervix, and fallopian tubes and was followed by a long and complicated 12-week recovery process. Obviously, no intimacy was allowed, and neither were lifting, bending, pushing, pulling, squatting, or kneeling. Many women experience muscle or nerve damage following a hysterectomy, which can make intimacy difficult or even impossible. Luckily, I didn’t have any permanent nerve damage, but I felt a huge difference in my body for months after the surgery.
This portion of my medical ordeal lasted over a year, and I think it gravely affected my relationship. He was patient and understanding, but he had no way of truly knowing what I was going through, given that he doesn’t experience female reproductive issues.
It was also hard for me to communicate the severity of my health issues because, in the medical world, reproductive complications are rarely talked about. I was never warned it could be an issue with aHUS. But upon further investigation in an aHUS Facebook group, many female patients have experienced similar complications.
Relationships can definitely be tested and pushed to the brink when a rare illness is involved. It can cause fear, stress, frustration, anxiety, and even PTSD for the patient and the partner alike. Patience and open communication are two of the most important factors in maintaining a relationship while facing medical woes.
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.