Important Qualities for Partners of People With Cushing’s

Having a rare disease is a struggle, and sometimes I feel alone, like nobody understands me.

Luckily, when I was going through Cushing’s disease, my fiancé and now husband, Logan, provided me with emotional support. It was difficult on both of us. While I was experiencing physical pain, my hormones and emotions were also going wild, so I wasn’t always level-headed. I am so lucky he has stuck with me through it all!

In my opinion, it’s important for the partner of someone with rare disease to be patient, empathetic, kind, and able to enjoy sedentary activities, because moving around with Cushing’s is difficult and painful at times.

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Patience is important, whether you have a friend or loved one with a chronic disease or not. I could be a little hot-tempered at times because I was so frustrated by the struggles I was facing, such as constant joint pain. Brain fog also made me forgetful, and I would sometimes snap at Logan over small things because I was always mentally exhausted. With Cushing’s, the stress hormone cortisol is elevated, which can do all sorts of harm to the body.

While I don’t condone this type of behavior toward a partner who is there to support you, it can happen due to effects of the disease. Having a patient and understanding partner can make the process so much easier.

There is a difference between empathy and sympathy, and empathy is definitely needed during this hard time. Sympathy is when we feel sad for somebody, almost as if we pity them, but don’t understand or connect with them. Empathy is when we can understand and share in another person’s feelings.

My husband was very supportive during this time, but he would sometimes express sympathy instead of empathy. For example, he would express that he didn’t understand how I was gaining weight even though I said I was dieting and working out. He felt bad, but he didn’t quite understand why I felt so helpless or unable to lose weight. Over time, he developed empathetic skills and started to understand my feelings.

Kat and Logan on Christmas in 2014. (Courtesy of Kat Rees)

Kindness is important to practice in general, but the type of kindness I’m referring to may include not commenting on a partner’s weight gain or different clothing sizes, or not making a partner feel bad if they’re having a difficult day and don’t want to do anything productive. There are many ways to show kindness.

Life with Cushing’s can often feel like too much due to the physical and mental exhaustion of excessive cortisol. Another way to show a partner kindness is by complimenting them on what they have accomplished.

It’s also important to find sedentary activities that both partners enjoy. Traveling, hiking, camping, going to amusement parks, playing sports, and anything that involves a lot of walking can be difficult for someone with Cushing’s.

Doing things at home together helps strengthen our relationship. It’s important for us to have our own hobbies, but it’s also important to do things together as a couple. Logan and I were a long-distance couple at the time, so we would play video games together, but other ideas include puzzles, board games, card games, painting, or cooking.

These qualities helped me feel supported and understood by my partner when I felt like no one else really understood me. I’m so incredibly lucky that I had someone who stuck around during this less than ideal time of weight gain, acne, snappiness, and hotheadedness.

I don’t always know how he did it, but I know he loved me for who I was, and was willing to be there for me while I recovered. Eventually, he got back the woman I was supposed to be without Cushing’s.

From left, Kat and Logan in 2014 and 2018. (Courtesy of Kat Rees)

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Note: Cushing’s Disease 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 Cushing’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Cushing’s.