Building a Support Network: Family, Friends, and Healthcare Professionals

Managing sickle cell isn’t just a solo journey; it’s about building a team that supports you emotionally, physically, and medically. I am beyond blessed for the built-in support system I was born into, especially my family. With sickle-cell cousins who went through what I’m currently facing, I had advocates and great examples in my life. I’ve had an amazing mother who fought for me and is still my advocate. Now, I’ve learned to advocate for myself in this journey.

I can’t imagine doing this journey without my brother Chance, who is neurodivergent and my best friend. Our relationship is a beautiful balance — yin and yang — as he handles the physical tasks, while I manage the household and financial aspects. I also have my sister Dana, who goes through the same things as me, and Lesley, who’s a nurse practitioner and truly understands the medical side of what I endure. My mother, having two daughters with sickle cell, has seen it all and knows how to support us when needed.

If you don’t have a built-in support system, that’s okay. You’re not alone. Wholeness Within Reach is here to be your support system. We will walk this journey with you, share resources, and be a community where you can find solace and connection.

It’s essential to seek out local community groups, churches, or online support spaces like our own Wholeness Within Reach group. These spaces provide not only the resources you need but a sense of belonging. Sometimes, the system may seem like it doesn’t support us well enough, which is why spaces like ours are vital to create those connections.

I’ve been lucky enough to have an excellent system with my family. My sister, Lesley, lives just down the street, and Chance is always there to help. Whenever myself or Dana goes into a flare-up, we can count on Lesley or Chance to get us to the hospital. However, there have been times when I had to advocate for myself — such as during college — when I had to drive myself to the hospital in pain. Advocating for yourself is just as important as having someone in your corner.

Finding the Right Healthcare TeamI moved to North Carolina for better healthcare because I did not feel supported in Michigan. The hospital I went to didn’t have the resources I needed, and I felt like they were doing more harm than good. If you feel that your healthcare providers aren’t meeting your needs, it’s crucial to advocate for yourself. Know your insurance, research your options, and find a team that will give you the care and support you deserve.

Having a support network doesn’t stop at family. My friends, especially my girlfriends, have been a lifeline for me emotionally. They help me stay grounded and remind me that I’m more than just my illness. We do all the things that bring me joy — we go to church together, hang out at the beach, and have girls’ nights. My girlfriends remind me that I’m still a woman with a life to live beyond this diagnosis.

Taking care of your mental health is just as crucial as physical care. Whether it’s therapy, meditation, journaling, or prayer, it’s essential to create space for mental health practices. Chronic illness can take a toll on your mental well-being, and seeking help through therapy or self-care practices is key. For me, therapy has been a lifesaver, along with practices like journaling and mindfulness.

In my journey, I’ve found a few resources that have been incredibly helpful. Apps like Calm for meditation, Spoonie Support for connecting with others managing chronic illnesses, and fitness tracking apps have made a significant difference in my routine. These tools can help you manage your pain and stress in a more structured way, allowing for a better quality of life.

I’d love to hear your story! What’s been the most valuable part of your support system? How have your family, friends, or healthcare team played a role in your chronic illness journey?

© WholenesswithinReach, 2024. All rights reserved. This blog and its content are protected by copyright law. Unauthorized use and/or duplication of this material without express and written permission from the author is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Deme @WholenesswithinReach with appropriate and specific direction to the original content.

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.