Loving someone with an incurable disease is the most emotionally straining thing I have ever experienced.
My significant other and I have been together for almost six years. During the summer of 2018, we all noticed the significant changes he was going through. He had lost around fifty pounds and had a lack of appetite. We had figured something was going on, however, we didn't realize it was anything serious.
Fast forward to the Fall semester of 2018. I had visited my boyfriend and we had expressed certain concerns, such as, through the night I would try and get him to stop uncontrollably itching his legs to the point of bleeding, or that he was looking a little yellow and was exhausted all the time. After seeing his sister in November, while I was at school, she pleaded with him to go to urgent care because he did not look good. He was yellow, exhausted, and very sickly looking. We didn't realize that the urgent care visit would be the precedent of the rest of our lives.
After coming home for Thanksgiving and spending a week straight in the hospital with him, it finally set in that something was not right. Between all the vomit, getting moved for testing, the weakness, the constant calling for medications because the pain was so severe, and the almost month-long stay in the hospital, it hit me full force that something was really wrong. Words will never truly describe the emotions I was feeling, or the burden of my thoughts that I felt were too selfish to pass on anyone, so I kept them to myself.
When we finally got the diagnosis, we were surprised. PSC, otherwise known as Primary Sclerosing Cholangitis, is an incurable liver disease that affects the bile ducts which become scarred and inflamed, more likely than not lead to cirrhosis and an inevitable transplant. There was no cure, rather the only solution was a liver transplant, and even then the disease can be recurring.
I was thinking selfishly. I was torn in two. What would our future look like? Could we have children? Could we ever do the things we used to?
Loving someone with an incurable disease is a mix of emotions. There is a constant fear in the back of my mind that he is going to wake up in intense pain and have to be rushed to the hospital. There is a constant fear of every time waiting for the bi-weekly blood test results to come back, in fear that his Bilirubin spiked again or he is undergoing a flare up and needs to be hospitalized. There is a constant anxiety that one day he's going to be fine, and the next day he won't be. Even the simple things, such as laying beside one another, was a constant fear I had, due to the pain he was in every day. What if I hit him in my sleep on accident? What if I accidentally hugged a little too tightly and caused him pain?
Loving someone with an incurable disease can be a fluctuation of emotions, however, he makes it worth it.