Oftentimes, when living with sickle cell disease (SCD) you must learn the key to bouncing back effectively and efficiently after undergoing a sickle cell pain crisis. This crisis may knock you down for a period of time that could last from a day to a couple of weeks or longer.

Currently, I am getting back to work after a two-week hospital stay. Aside from the many follow-up appointments I had to schedule and a new medication I am getting used to, I have a long to-do list of telephone calls to return, a book to complete editing and a number of other responsibilities to meet. Your reliability and dependability are often challenged when you have SCD. Case in point: I have missed writing my blog and want to get back into the habit of producing these posts.

As with many chronic health conditions, being out of commission can lead to feelings of depression. In addition, another challenge with having SCD is maintaining a positive mindset. Although being upbeat and maintaining an optimistic outlook will not change the fact that you have sickle cell and suffer from pain crises, these positive feelings can improve your overall quality of life, reduce your stress, lessen the emotional toll the disease takes on you and, in general, work in your best interest.

When I was going to school, I recall always having to make up school work. Since I liked school and academics, I wasn’t dismayed by having to catch up on school work during the weekends and use my well days to study. Still, one of my greatest challenges with keeping up academically occurred while I was in college.

During my first three years of college, I’d suffer a sickle cell pain crisis at least once every three weeks. I lived on campus about an hour away from home. Frequently, I would end up in the student health center, waiting for an ambulance to bring me to the hospital where doctors would attempt to relieve the excruciating pain I experienced during a crisis. Fortunately, between my family and college friends, I had an excellent support system.

Below, are some ways I used to manage being in college and having sickle cell disease:

• At the beginning of each semester, when starting your classes look for classmates that you can get to know who are willing to share their contact information. Most likely, occasionally, you will miss class due to sickle cell pain crises. Ask one or more students in each of your classes to share their notes with you from the days you missed.
• Let your professors know up front about your medical condition. During the first two weeks of classes, schedule an appointment with your professors during their office hours and explain that you have sickle cell disease and how the illness affects you. Often, professors are understanding and willing to work with you so you can make up assignments and tests as necessary.
• Find out if your school has a disability office, or a dean of student affairs, who can help you by writing a letter to alert your professors about your illness and further legitimize your medical circumstances.
• Keep a notebook or a small binder with the following information:
- Contact information of family and friends
- Your class schedule and professors’ names and contact information
- A list of your medications
- Your doctor’s contact information
- Your pharmacy’s name and telephone information
- Any pertinent information that someone else might need to be helpful to you when you
are in the hospital
- Your work information so someone can call to let your employer know that you will
be out sick.

Although these steps may appear burdensome, they are very important because the onset of a sickle cell crisis can be extreme and unpredictable.

At this point, I’m getting back into the rhythm of being well, catching up on my work and writing this blog. I am getting my momentum back and feeling well. For me, this is when it’s important to optimize the times I feel healthy and strong, so I can reduce any avoidable stress during those periods when a sickle cell crisis strikes.