Taking steps for better mental health since my PNH diagnosis

Talk therapy is still on the horizon, but other strategies have helped me adjust

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by Erin Fortin |

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When I was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH), the mental weight I carried to process, accept, and move forward with this new life was heavy. I had trouble wrapping my head around it to understand what had happened.

At the time, I was fresh out of multiple nights in the hospital (my first admission) and had undergone intimidating medical procedures, including a blood transfusion and a bone marrow biopsy. And frankly, I was scared and drained, mentally and physically.

After a few days of seeing several doctors and deciding on treatment options, I talked to my mom about starting talk therapy to help me process it all. I was so overwhelmed with everything that I didn’t know where to begin to heal from all this trauma. At the time, my main hope for talk therapy was to work through my needle phobia, especially since I knew IVs and blood draws were going to be a frequent obstacle from now on.

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How PNH changed my life mentally, physically, and emotionally

My family supported me in seeking professional help, and I knew it was the right thing to do. But it didn’t happen. What with scheduling doctor appointments, calling insurance companies, connecting with an infusion center, and meeting nurses and other patients, finding a therapist was at the bottom of the list.

Time passed, and I became accustomed to my new lifestyle. Now, four years later, I still haven’t seen a therapist to unpack all that happened around my diagnosis.

Even after all this time, one day I’d still like to begin this part of my mental health treatment, as my struggles with PNH are often disturbing. Meanwhile, I’ve used three outlets to build my mental strength and keep me on the path forward.

Taking part in PNH studies

I’ve been grateful to take part in multiple PNH projects, such as marketing studies, videos of advice to patients, and interviews to help professionals understand what life with PNH is like. The questions I’ve been asked have been therapy for me in many ways.

Some have asked about my emotions after getting my diagnosis compared with my emotions now. Another asked, and I’m paraphrasing, “If you could picture PNH as a physical object, what would it be?” These personal questions and others got me thinking in depth. I know these studies benefit the people conducting them, but they’ve helped me process my emotions, as well.

Connecting with other patients

Talking with other patients who have the same daily struggles I do — people who can relate to all the emotions and physical symptoms I face — has helped me feel less alone. I’m grateful for my everyday support system of family and friends, but they don’t know what having PNH feels like. My fellow patients do.

I’ve had phone calls and FaceTime video chats lasting hours with other patients, and what I’ve learned from them and their journey has left me feeling empowered. Bonding over our shared ailments and medical experiences makes for easy-flowing conversations that go deeper than my usual.

Talking realistically to myself

A big part of my mental health journey with PNH has been talking to myself. When I was struggling the most with symptoms and feeling overwhelmed, I remember telling myself that I wanted more than that out of life.

In fact, I still want the life I dreamed of before my diagnosis. But if I want to reach those goals despite my new obstacles, it’s up to me. Or I could give up. I chose, and still choose every day, to not let PNH hold me back. I give myself pep talks as motivation to push through the problems.

Still, I’m looking forward to making more time in my schedule to seek talk therapy. Even though I’ve come so far in my PNH journey, I still have topics to unpack, including some from my diagnosis days.

I encourage patients to join me in these mental health exercises either at home or in therapy sessions. Nothing is stronger than our mental fortitude.

How have you treated your mental health with PNH? Please let me know 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.