5 strategies I’ve developed to balance my 2 chronic illnesses

Putting together a plan to manage my PNH and aplastic anemia diagnoses

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by Brandi Lewis |

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In 2016, I received the news that changed the course of my life, words I never thought I’d hear: “You’ve been diagnosed with two chronic illnesses.”

Turns out I was battling both aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH). My thoughts were filled with confusion and questions about the future, including how I was going to tackle two diagnoses at once.

I remember that day so vividly. My doctor, whom I’d known for years since I went to school with her daughter, had begun to let down her guard as the patient-doctor relationship became more like a pair of family friends. I found myself consoling her, saying, “I’ll be OK. It’s OK.” I left the hospital and traveled toward the parking deck, and when I stepped foot in the garage, tears began rolling down my face.

I started to pick up the pace. I entered my car, closed the door, and lost it. I was having a full-on meltdown. I was not OK. I was frustrated, confused, and angry. As no one was to blame for my diagnoses, I cried in frustration at the current state of my life. I cried all the way home and on the phone with my mom, took the day off work, and sulked.

After somewhat coming to terms with my diagnoses, I knew I had a big task to accomplish. But I wondered how I was going to navigate this roadblock. “Now I have two chronic illnesses to learn more about?” I asked myself. As much as I wanted to Google my diagnoses, I decided to take another route.

I instilled five strategies to help me juggle my conditions.

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3 tricks to staying positive since my PNH diagnosis

1. Develop a strong relationship with my doctors

As confusion set in, I had to find valuable resources to equip me with the knowledge to tackle my diagnoses. I needed smart people on my team, with the most important being a doctor who specialized in both illnesses.

Not only did the doctor have to be knowledgeable about the PNH diagnosis and the aplastic anemia, but together we had to build a trusting and strong relationship. Every bond between a patient and a doctor is unique. My doctor needed to understand what I was going through, even if they hadn’t felt my emotions and physical symptoms.

2. Remind myself to live and experience the joys of life

When battling chronic illnesses, it’s easy to stay in a negative state of mind. It becomes second nature to sulk and see only what’s not going right.

At times, I’ve had to push myself to do things outside my comfort zone to help me remember the beauty of life. As easy as it is to search and find the bad in the world, it’s just as easy to find the good. Appreciate the joys of life, and live in that moment.

3. Track my symptoms and doctor visits

To have quick access to my health history and manage my symptoms, I asked for copies of test results and stored them in a special binder. It became stacked with my latest blood counts, notes from doctor visits, clone-size tests, and a symptom tracker.

Having this information at my fingertips helped speed up the process when a doctor said, “I’ll reach out to your other doctor for your most recent records.”

4. Learn about both of my illnesses

Instead of Googling my illnesses, I found resources through my doctors, National Organization for Rare Disorders conferences, Facebook groups for blood disorder patients, and social workers. I also gathered a plethora of information from other patients’ stories.

Hearing all of those perspectives helped me understand how my journey could go.

5. Reach out to other patients for their perspective

Finding and being a part of the patient community helped me understand that I wasn’t alone. I learned how to combat my illnesses by asking questions about symptoms I’d experienced, guiding me to resources and learning from others whose conditions were similar to mine. Those patient stories have had a positive impact on my health, as the wise words helped me know that I, too, would one day be able to manage my symptoms.

Living with two diagnoses can be hard to handle. I haven’t had a perfect journey, but these five strategies have helped me stay on the right track — or, when the inevitable slips happen, get back on track. If you’re learning how to manage your illnesses, I hope this list inspires you.

In the comments below, please tell me what strategies you’d add to this list.

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.