Having a Support Network Is Key When Dealing With Chronic Conditions
“You’ll Never Walk Alone” is a famous ballad sung by fans of the Liverpool Football Club. As a Manchester United fan, I hate Liverpool, but I love this anthem. Is that allowed? It reminds me that in soccer and life, you can’t do things alone.
Yes, there are always those depressing quotes like, “I was born alone and I will die alone,” but then there is life, and you’re not supposed to do that alone. With sickle cell disease, I always felt like I had to do it alone. No one understood, no one really cared, I didn’t want to be a burden, and I would do it all by myself, I thought.
I tried desperately to separate my life from sickle cell by keeping it locked up in its cage, telling no one when I was in pain except close family members. I didn’t want anyone to see me as weak or “less than,” so I would keep it a secret when I was hospitalized.
I found pride in people saying they had forgotten I had sickle cell, so I tried so hard to maintain the façade, and I dealt with my pain in secrecy. Only my family would know when I was hospitalized, and once I was discharged, I’d message my friends again as if nothing happened.
In my defense, I was too busy focusing on the pain to really think about messaging anyone at the time. But I never realized the impact that not sharing this information had on all of us.
I often talk about how isolating sickle cell can be. A condition that not many people know about, it can be tiring to continuously explain it. However, not sharing what I was going through with those closest to me meant that this feeling of isolation built up within me.
Often I would lie or downplay how a crisis was affecting me. It was easier to say I’m tired or make up a different excuse because I didn’t want to be perceived as weak, especially to those in my inner circle. By pretending to be OK, I was only hurting myself, and by lying I was hurting those around me and pushing those closest to me away. I was walking this path alone, my pain and negative thoughts my companions.
When I found myself in the hospital in 2019, it was probably the first time I allowed my friends to see me there. Honestly, it became my favorite hospital admission, which is a weird thing to say considering the pain involved. For so long, I had been hiding my worst state, ashamed of what people would think when they saw me in pain. But the reality was so much better than what I had imagined in my mind during all of the previous hospitalizations.
The love and care my friends showed me during that period really melted my heart. They didn’t look at me with pity or talk to me differently, they treated me the same. When a nurse didn’t respond to my call for medication, they went and followed up for me. When the hospital food was completely inedible, they brought me alternatives.
For the first time, I didn’t feel so alone in the hospital. My friends were with me every step of the way. This also helped to take the burden off my family because they knew there was someone there to make sure I was OK.
My friends also supported my journey into advocacy. They gave me the courage to turn up the volume on all things sickle cell. Sharing my story has connected me with so many amazing people and organizations along the way. Each person has taught me something about myself, sickle cell, or life in general, and I no longer feel as isolated.
This was an important lesson for me to learn. It took 26 years to learn it, but no one can walk alone in this world. Opening up to my friends allowed me to be true to myself and walk with others on this journey.
As Gerry and the Pacemakers sang, “Walk on, walk on, with hope in your heart, and you’ll never walk alone.”
Note: Sickle Cell 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 Sickle Cell Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sickle cell disease.