What I look for in a partner as someone living with PNH

Recently, while talking to a fellow paroxysmal nocturnal hemoglobinuria (PNH) patient who is married, I mentioned that I always wonder how I’ll find a partner who understands my illness. She said that the right person will be a part of your life, no matter what. Her response brought me comfort and peace.

I need someone who not only “gets” me as a person, but who will take the time to learn about my rare blood disorders, PNH and aplastic anemia, including their symptoms and the ways to support me.

Throughout my health journey, my parents have cared for me, which has strengthened our bond. Facing hardships and turbulent times together brought us closer and made us more resilient. They never left my side, even during the toughest moments.

So what do I need to create the same kind of bond with a partner? I began researching this question and found that it is a common topic of discussion. From research and my own experience, I realized that I need someone who’s both physically present and emotionally supportive. There must be a balance between allowing me time to rest and encouraging me to keep going when I feel down.

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April 22, 2025 by Shaquilla Gordon

What I’ve learned about navigating relationships while living with PNH

Emotional bond

Battling chronic illnesses brings many emotional ups and downs that can be hard to manage. When I was undergoing treatment, my medication could also affect my emotions and make me more irritable. My parents would notice when I wasn’t acting like myself.

To cope with emotional days, my mom would give me words of wisdom or say, “Let’s get out of the house and go on a walk.” Changing the scenery and being active allowed me to focus on something else and give my mind a break from negativity.

Having a partner who is patient, selfless, understanding, and persistent is crucial. I need someone who understands my emotions, knows how to get me out of a sad place, and has patience when my day isn’t going well. Fighting an illness together can strengthen a relationship, and that strong bond makes it a little easier to face health challenges.

Physical bond

My physical appearance often reflects how I’m feeling. Sometimes my parents would notice a yellow tint in my eyes or a new bruise on my body and ask if I was OK.

Other symptoms, such as brain fog, aren’t as visible. I have a hard time remembering recent events, which I often describe as short-term memory loss. This can make me appear forgetful or uncaring. Having a partner who understands my symptoms, how they affect me, and ways to help is essential.

Communicating about these issues and more makes for a great partnership. Partners of chronic illness patients often act as caregivers. They need to balance their emotions while helping us manage ours. Support groups are valuable resources for learning how other patients and caregivers cope with health issues.

If you’re living with PNH, what do you need in a partner? For those in a relationship, how has your partner shown understanding and support? Please share in the comments below.

Note: PNH 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 PNH News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to paroxysmal nocturnal hemoglobinuria.

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