Navigating the Emotional and Physical Terrain of Sickle Cell Treatments

Living with sickle cell disease is a lifelong journey marked by routine treatments, unexpected flare-ups, and the daily management of symptoms. It’s not just a physical battle; it’s an emotional one that requires resilience, self-advocacy, and the ability to find moments of joy in the midst of struggle. Each treatment comes with its own emotional weight—fear, anxiety, frustration—but it also brings opportunities to reconnect with gratitude, find beauty in the small things, and remember why the fight is worth it.

Grieving Life’s Lost Moments While Embracing Gratitude

Sickle cell has a way of interrupting life at the most inconvenient times, forcing me to cancel plans, miss important events, or lose entire weeks to debilitating pain. It’s normal to feel grief over these lost moments—the opportunities taken away by a disease that often feels relentless. There are days when the sadness is overwhelming, when I mourn the life that could have been if not for this illness.

But amidst the grief, I have found gratitude. I’ve learned to be thankful for the days when I feel well enough to enjoy the simple pleasures of life. I cherish the moments when I can work, spend time with family, or just feel at peace in my own body. Gratitude doesn’t negate the grief, but it does offer a counterbalance—a reminder that even on the darkest days, there are still reasons to be thankful. I remind myself that I’m still here, still fighting, and that in itself is worth celebrating.

Preparing for Treatment Days: Comfort as a Form of Self-Care

Preparation is key when facing a treatment day. It’s not just about the medical logistics; it’s about setting an emotional tone for the day. I choose comfort over style—opting for oversized sweaters, joggers, UGG boots, and my favorite glasses. It may not seem like much, but dressing comfortably helps me feel more at ease during the process. I bring along a book and my tablet, creating a small oasis in the treatment room where I can lose myself in a story or catch up on a show while waiting for the medications to work.

This preparation extends beyond clothing; it’s about mentally gearing up for the day. I start with prayer and affirmations, reminding myself that I am healed and that God’s strength will carry me through. My friends and family usually check in, sending me love and encouragement that help me feel surrounded by support, even when I’m alone at the hospital.

The Power of Visualization: Finding Beauty Amidst the Struggle

Treatment days often start with a car ride to the hospital, and during that time, I practice grounding techniques to manage the anxiety that inevitably rises. I look out the window and focus on the trees, the changing colors of the leaves, the play of light and shadow. Autumn is especially meaningful to me because it was my grandmother’s favorite season, and I find comfort in the reds, oranges, and yellows that mark this time of year.

While the physical reality of my illness can feel heavy, visualization helps me stay grounded in the present and reminds me of the future I’m working towards. I picture my nieces and nephews growing up, achieving my personal and career goals, and living a life that isn’t defined solely by sickle cell. These images of the future give me hope and provide a mental escape from the pain.

Turning Routine Into Ritual: Finding Joy on Treatment Days

To make the best of a challenging situation, I’ve established a comforting ritual for my treatment days. After finishing, I treat myself to my favorite meal from Qdoba, indulging in whatever dessert I crave because I’ve earned it. It’s a small reward for getting through another round of treatment and serves as a way to reclaim some joy on an otherwise tough day.

Once home, I take a long, hot shower to wash away the stress and then wrap myself in cozy pajamas. I light a candle, put on my favorite cartoons, and allow myself to become childlike again, at least for a few hours. It’s a way to transform what could be a draining experience into one with moments of comfort and care. These rituals have become a source of strength, providing familiarity and a sense of control in a life where much feels uncertain.

Navigating the Healthcare System: The Importance of Self-Advocacy

Self-advocacy is a crucial skill when navigating the healthcare system, especially for those of us living with chronic conditions. There have been times when I’ve felt unheard, dismissed, or judged by medical professionals who don’t understand the realities of living with sickle cell. Just recently, I visited a day hospital after my routine apheresis. Instead of asking about my pain or assessing my condition, the doctor bluntly told me that I’d only be given enough medication to “take the edge off.” It was a disheartening experience, but not an unfamiliar one.

Fortunately, I know my body well enough to advocate for myself. I requested additional rounds of treatment because I understood how my pain patterns unfold—starting with an intense flare before gradually subsiding with the right medication. It took a few more rounds of pain relief to get there, but knowing my body gave me the confidence to insist on what I needed.

The Emotional Rollercoaster: From Panic to Calm

Every treatment brings its own set of emotions, and there’s no way to fully prepare for the highs and lows. Some days I’m overcome with panic—my heart races, my breathing quickens, and I feel trapped in a cycle of anxiety. But I’ve found ways to calm myself during these moments. I breathe deeply, visualize a peaceful scene, or distract myself with a comforting show or book. It’s not about pretending the anxiety doesn’t exist; it’s about finding ways to work through it.

Coping With Judgment and Misconceptions

Living with a chronic illness comes with a unique set of challenges, one of which is the constant judgment from others. There are assumptions made about my condition—misconceptions that sickle cell is solely a childhood disease, or that people living with it are just looking for attention. These stereotypes can be discouraging, but I’ve learned not to internalize them. I remind myself that my experience is valid, and my need for care is legitimate. I focus on educating those who are willing to listen and advocating for myself when I encounter those who are not.

The Role of Support: Surrounding Myself With Love and Compassion

Having a strong support system makes all the difference in this journey. On difficult days, knowing that my family and friends are there for me brings an immense sense of comfort. Whether it’s my brother checking on me during a flare-up, or my friends reminding me that I’m more than my diagnosis, their presence helps lighten the load. Their support is a daily reminder that I am not alone in this fight, and it motivates me to keep going.

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Disclaimer:

The stories, experiences, and information shared on this blog are my personal views and should not be construed as professional advice. This is my personal journey, and it may not be applicable to everyone. Please consult a professional if you are seeking advice on specific health, financial, or legal matters.