Festive Season, Fragile Body

Throughout the year, my blog follows monthly awareness themes, highlighting different chronic and long term conditions and the realities that often go unseen. From epilepsy awareness in November to other condition focused conversations across the calendar, this space is usually dedicated to education, visibility and advocacy on a broader scale.

December, however, feels different. As the year draws to a close and the world shifts into celebration mode, I want to use this month to speak more personally about life with sickle cell during the holiday season. Rather than focusing on formal awareness campaigns, I will be sharing honest reflections on how this time of year can affect those of us living with sickle cell. The joy, the pressure, the fatigue, and the emotions that surface when celebrations meet an unpredictable body.

This month is about lived experience. It is about acknowledging how holidays, birthdays and end of year gatherings can feel when you are managing pain, energy limits and distance from loved ones. My hope is that these conversations offer comfort to those who recognise themselves in these words, while also helping others better understand what this season can look like beyond the festive surface.

An honest look at Sickle Cell during holidays, birthdays and events!!

Birthdays, Family events and holidays are supposed to feel fun, light hearted and easy. They are meant to lift your spirits, bring people together and create memories you can remember and look back on with a smile. Yet when you live with sickle cell, special occasions often come with a quiet pressure that most people never see. Over the years I have learnt that holidays, birthdays and even simple social events can feel different for those of us managing long term conditions, especially Sickle Cell. The joy is still there, but it also comes with a layer of caution, the fear of getting sick and a constant awareness of how you feel and how quickly things can change.

Sickle cell does not take a break because it is Christmas or your birthday. Pain episodes and flare ups can present at any moment, sometimes even by surprise. one minute you’re laughing or dancing having fun and the next, you’re in an ambulance heading to the hospital. Some times even moods can bring on a pain episode, on the days prior to the event, maybe your so excited or apprehensive and nervous, that in itself can trigger a flare up. For instance, when I was younger, every time the exam period would come around and I was nervous, somehow it always met me in the hospital. I’ve missed so many birthdays, fun days and family functions over the years because of sickle cell. There would even be times when I would be in pain but trying to pretend I wasn’t, just so I can attend the function or the trip, but my mom however always knew she just always had that sixth sense.

Fatigue can also settle in even before the day begins. Something as small as cold weather, too much noise, or a long day on your feet can push your body into a place you did not plan for. While everyone else might be laughing and catching up, you may be quietly calculating how much energy you have left, whether you should sit down, or how to excuse yourself if a crisis begins to build. It is a strange balance between wanting to take part and needing to rest and protect yourself.

There is also the pressure to show up, even when your body is asking you not to. Cancelled plans seem to carry more guilt during special occasions. You worry that people will think you are unreliable or dramatic. You worry about disappointing the people who care about you. Birthdays and events are built around the idea that you will be present, lively and involved, yet sickle cell is unpredictable. It can turn the simplest outing into a mental negotiation. Going out might mean thinking about transport, temperature, accessibility or whether the environment will trigger pain. Even when you do attend, you may still feel the need to leave early or quietly disappear for a rest.

What many people do not realise is the emotional side of it all. Sometimes the hardest part of sickle cell during celebrations is the feeling of watching life carry on around you and without you. You can be surrounded by people you love yet feel alone and separate from the moment because of the pain or exhaustion that pulls you away from the joy in the room. You want to join in fully, but your body does not always allow it. There is a sadness in that, and it is okay to acknowledge it.

This year Christmas looks a little different for me. I am spending it away from home ( In Montserrat) and my immediate family, and although I am grateful for the invitations I have received from friends and extended family, it is not the same as being with your mom, dad and siblings. There is a specific comfort that comes from being with the people who have known your condition since the beginning. They understand the little things without needing to ask. They notice when your voice changes or your movements slow down. They know how to step in without making a fuss. Being apart from them during the holidays has its own ache, especially when you think about the possibility of being unwell without that familiar support.

Loneliness can feel deeper during Christmas, especially when your away from home and at a time where the world seems to focus on togetherness. Some of us spend the holidays resting quietly, building our own traditions, or holding onto small comforts that bring peace. My Ideal Christmas, in a perfect world would be Traveling back home, Attending the Christmas Festival that Montserrat has every year, watching my favourite films, enjoy my mothers cooking, hanging out with childhood friends, enjoy the local drinks and just the Joy of being with the ones I love the most. These small rituals become a way of creating your own version of celebration, one that respects your limits without taking away your joy.

Sharing experiences like this matters. It is part of why I created Chronic Junk. Too many people with chronic illnesses feel invisible during times when everyone else seems full of life. By speaking openly about the challenges and the emotional impact, we create space for others to feel seen and understood. This is advocacy as much as it is honesty. And if you are someone living with sickle cell or any long term condition, I hope you know that there is no shame in setting boundaries, choosing rest or celebrating in your own way.

Holidays and special events may look different for us, but different does not mean less meaningful. Joy can exist in quiet spaces, in slow days, in honest conversations and in the simple fact that you are doing your best with what your body allows. It is okay to grieve the parts that are difficult. It is also okay to embrace the moments that still bring light and

If you find yourself navigating pain, loneliness or distance from loved ones this season, I hope you feel held in the knowledge that you are not the only one. There is strength in the way you continue to show up for yourself, even on the days when celebrations feel heavy. Take comfort in knowing that even if the holidays look different and if it so happens that you end up in the hospital for the holidays, New Year and your birthday, that too is ok and always remember to be kind to yourself in the midst of still holding meaning, connection and hope.

💜 Want to stay connected?

You can find me and my work across different platforms! Follow along on Instagram @Chronic_junk_, join the community on Facebook at Chronic Junk, visit my website at ChronicJunk.com, catch behind-the-scenes and creative fun on TikTok @chronic.junk, and don’t forget to keep up with new posts right here on the blog 👉 chronicjunk.blog. Let’s spread awareness and celebrate resilience together! 🌍✨