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How My Husband's Love Saved My Life As Someone With a Rare, Chronic Illness

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I see and hear about the relationship difficulties many people with chronic illness face everyday, but mine is a bit of a different story. I wasn’t looking to meet anyone when I meet the man who would become my husband. I was 23 and taking a break from college so I could work full-time and get health insurance. I had been sick for some time, but my symptoms were getting worse. I needed answers. I had been hospitalized a few times — once for internal bleeding (with unclear cause even after exploratory surgery) and once after being paralyzed for a few days and severely dehydrated. I woke many mornings to severe head pain and vomiting. I knew something was wrong, but I had no diagnosis, despite advocating for myself the best I could and following up with doctor appointments and tests. I pulled myself together each day and kept hoping I would not end up back in the ER — or if I did, that someone would at least finally figure out what was wrong with me.

To the outside world, I looked fine, even to those close to me. I went to work except when I couldn’t. I worked out, ate well and looked as healthy as anyone else my age. When I met my husband and he asked me out, I did not explain any of my health conditions, because I did not have a name for them myself. In fact, I didn’t even really know just how abnormal my symptoms and experiences really were. I thought maybe many people live with as much pain and illness as me.

the author and her husband arm in arm with a fence and trees behind them

We weren’t dating long before Chris saw me sick — really sick. I was throwing up so hard, I couldn’t even hold down any water and was in excruciating pain. These episodes would last for days, so I told Chris not to worry and that he could just go. I said I would call him when I was better, but he wouldn’t leave. He did something no one else ever did before: he stayed with me and took care of me the best he could. He saw that I had something really wrong with me. This wasn’t just a stomach flu. He insisted I keep looking for answers. Chris was working as a pharmacist at a hospital with a number of clinics, so he started making appointments for me with doctors he knew. At times, I resisted. How many times should a person go through the same process with no result? Being sick was exhausting enough, but having to juggle more and more appointments and tests, especially when I had already lost faith that anyone would actually help, was really overwhelming.

Chris was with me for every appointment and test. He still is. I would like to say my diagnosis came easily. It didn’t. No doctor figured out everything that was wrong with me. I asked for the tests that led to my diagnoses of two rare primary immune deficiency diseases. I had finally found a doctor who listened and gave me the tests I requested. It has taken years, but I have 10 known chronic conditions including three rare diseases.

Twenty-three years later, I am still looking for answers. Currently, I am researching getting my genome sequenced so I can actually know what gene is causing my illnesses, and possibly be matched with a researcher in the future. I don’t know if I could have come this far without my husband’s love and support.

I never had a choice but to deal with my conditions. You can’t exactly run away from your own body. However, Chris is healthy and did not have to be there for me through so much suffering. We have now been together 23 years — exactly half my life. Chris sets up and administers my weekly infusions for me so I don’t need a nurse. Some people find rare disease survivors inspirational. I won’t lie, its not easy, but I never had a choice. My husband did, and he has chosen to share my path which has been difficult, frightening, but also amazing and beautiful. His love and devotion helped save my life.

Author and husband standing under a cherry blossom tree

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Originally published: February 5, 2018
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