Living with Sickle Cell Disease has meant that pain is not an occasional visitor in my life; it is something I have had to learn to live with. Over the years, I have come to understand that pain does more than affect the body; it changes how you see people.
It reveals character, tests relationships, and exposes both the depth of compassion and the limits of understanding. In many ways, pain has been one of my greatest teachers, not only about endurance, but also about human nature.
Living with chronic pain has a way of changing how you see the world and, more specifically, how you see people. Pain strips life down to its essentials. It removes the illusion of control and reveals what is often hidden beneath the surface.
Over time, I have come to realise that pain is not only a physical experience; it is also a lens through which relationships are tested, refined, and sometimes redefined.
Living with Sickle Cell Disease has taught me many things about my body. But perhaps more unexpectedly, it has taught me a great deal about people.
- Not everyone will understand
One of the first lessons pain teaches is that not everyone will understand your experience. People may try. They may ask questions. They may even express sympathy. But unless someone has lived with chronic pain, it is difficult to fully grasp what it means to carry it daily.
You may hear comments like, “But you look fine,” or “At least it’s not all the time.” These comments are often not meant to harm, but they can feel dismissive.
Over time, I have learned to release the expectation that everyone must understand. Some people simply cannot, and that is okay. Understanding is valuable, but it is not always necessary for compassion.
- Some people will surprise you
Pain has a way of revealing unexpected kindness. There are people who step in quietly, without being asked. People who check in, who remember, and who show up in small but meaningful ways.
Sometimes, those who support you the most are not the ones you expected. A simple message. A moment of patience. A willingness to listen. These gestures may seem small, but when you are navigating pain, they carry great weight.
Pain teaches you to notice these things, to value them, and to recognise that kindness does not always come loudly; it often comes gently.
- Others will disappear
This is one of the more difficult lessons. Pain can make people uncomfortable. It disrupts normal patterns and introduces uncertainty. Not everyone knows how to respond to that.
Some people withdraw. Some become distant. Others may not know what to say and choose silence instead.
At first, this can feel personal. But over time, I have come to understand that it is often not about me. It is about their discomfort, their limitations, or their inability to engage with something they do not understand.
Pain reveals not only who is present, but also who is absent. And while that can be painful in itself, it also brings clarity.
- Strength is often misunderstood
People often associate strength with visible endurance, the ability to keep going, to push through, and to appear unaffected. But living with chronic pain teaches a different definition of strength.
Strength is not always loud. It is not always visible.
Sometimes, strength is:
choosing to rest when your body demands it
asking for help when you would rather not
showing up in whatever way you can, even when it is not at full capacity
Yet, because this kind of strength does not always match society’s expectations, it can be overlooked.
Pain has taught me that real strength is often quiet. It is found in persistence, not performance.
- Compassion is a choice
Perhaps the most important lesson pain has taught me is that compassion is not automatic; it is a choice.
Some people choose to be compassionate. They choose to listen, to learn, and to respond with care. Others do not. And this choice shapes relationships in profound ways.
Living with pain has also made me more aware of the importance of extending compassion to others. Just as my struggles are not always visible, neither are theirs.
Pain has a way of deepening empathy, if we allow it to.
Pain changes many things. It changes how you move through the world. It changes your priorities. It changes your relationship with your own body. But it also changes how you see people.
It reveals who is able to sit with discomfort and who turns away from it. It highlights quiet acts of kindness and exposes the limits of understanding.
And in the process, it teaches you something invaluable:
While not everyone will understand your pain, the presence of even a few compassionate people can make the journey more bearable.
Living with SCD has not only shaped my physical experience, it has also reshaped my understanding of human connection. And perhaps that, in itself, is a lesson worth holding on to.
If you would like to get in touch with me about Sickle cell, do so, via my email address: [email protected]. And do check out my blog: https://www.dailylivingwithsicklecell.com/ My book on Sickle Cell – HOW TO LIVE WITH SICKLE CELL and my other books are available for purchase on www.amazon.com.
Read the full article here
