Enjoying your life and managing sickle cell aren’t mutually exclusive

As the calendar fills up with weddings, birthdays, end-of-year events, and long-overdue catch-ups, it’s natural to feel excited. For those of us living with sickle cell disease, a second feeling often creeps in: anxiety. I have worried about how I will manage the fatigue. What do I do if I overdo it? What if I miss out?

With a bit of proactive planning and some honest conversations, however, you can take part in all the things that matter most to you without sacrificing your health.

I have a significant number of social commitments in the coming weeks. I’ve also recently started a new job, so avoiding time off is important, too.

Here are some practical and empowering steps I’m taking to prepare for this busy social period and keep sickle cell, fatigue, and a crisis at bay.

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Plan around your exchange transfusion

If you’re on a regular exchange transfusion schedule like I am, timing is everything. So you should try to align your transfusion so it’s as close to the beginning of your busiest period as possible.

This ensures you’re starting with the best hemoglobin levels possible, giving you more stamina and reducing the risk of a crisis. If that means speaking to your hematology team to adjust your timing, don’t hesitate, as this kind of planning is part of your long-term health management.

Honest communication with loved ones

Sometimes, asking others to be flexible feels awkward, but the people who love and value you will understand that your health has to come first. Establishing preventive measures can ensure you don’t have to sacrifice your health on the altar of trying to have a social life. Whether you’re in the bridal party of a close friend or attending a long weekend of family events, let people know early on what works for you.

For example, I know when I’m a bridesmaid I need to request a late start time, so I can maximize my energy through the day. Especially as Nigerian weddings can be extremely strenuous and make for very long days.

Remember, you’re not asking for special treatment; you’re asking for sustainable inclusion. And most of the time, people are more than willing to accommodate when they understand why. Be gracious to your loved ones also. If you don’t communicate your needs, there is no way for them to know your needs.

Get organized early

Stress is a known trigger for sickle cell crises, and it often sneaks up when you’re trying to juggle too many things at once. So, the earlier you plan, the calmer you’ll feel.

To stay organized:

• Sort out outfits and travel plans weeks in advance.
• Set reminders for hydration and medication because they can be easy to forget, and hydration is doubly important if you are consuming alcohol.
• Schedule adequate rest.
• Delegate tasks or have a backup person if you’re involved in event planning.
• For emergencies, have a backup plan, such as traveling with more than enough medication and other treatment options, such as oxygen therapy.

The more you prepare up front, the less reactive you’ll need to be and the more energy you’ll have for enjoying special moments.

Don’t overpack your calendar and make recovery a priority

When invitations pile up, it’s tempting to say yes to everything. But with sickle cell, energy is a limited resource. Think of it like a budget; you can’t spend it all in one go and expect no consequences. Space out your commitments, build in at least one full rest day between big events, and be selective about where you focus your energy. For example, from October through November, I’ve had to decline all impromptu social events and catch-ups so I can focus on events that require more of my time and energy.

Recovery time isn’t a luxury, it’s essential. After any major outing, allow yourself time to rest, hydrate, and decompress. Even if you feel OK, sickle cell often works on a delay, so protecting your recovery time is key to staying well. Don’t wait until you’re unwell to slow down. Plan rest days where your only priorities are food, fluids, warmth, and sleep. It’s this balance that allows you to stay well longer and actually enjoy the moments that matter.

Enjoying your life and managing sickle cell are not mutually exclusive. Yes, your preparation might look different and your boundaries might need to be firm, but that’s what will allow you to show up fully and joyfully. So take care of your future self while celebrating the present. You deserve to be part of the fun without paying for it with your health later.

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.