Tips for Dealing with Uncertainty

People with many chronic conditions, including sickle cell disease (SCD), experience “illness uncertainty.” This is the feeling when illness-related events are hard to explain, predict, or understand. The uncertainty could be about the future, the outcomes of an event, or the meaning of an illness-related event. Uncertainty adds stress to people living with many chronic conditions.

The best ways to reduce uncertainty are to increase education and social support systems. Even still, uncertainty can have a negative impact on your mental health. It is helpful to have tools to use to cope with uncertainty.

The uncertainties of living with sickle cell disease

People with sickle cell disease (SCD) and their families experience many uncertainties related to the disease. Some of these include:^1,2

• When the next episode of acute pain will occur
• What is triggering or causing a pain episode
• The seriousness of a complication
• What doctors mean when they explain conditions, test results, and treatments
• Whether treatments are working
• How to manage healthcare after leaving the hospital
• How long complications will last
• Which daily activities are healthy and safe
• How to plan for the future
• How doctors in the ER will treat pain

Uncertainty can affect discussions and how well you stick to treatments. Reducing these uncertainties can also improve your mental health and coping abilities.²

Tips for coping with uncertainty

There are steps you can take to reduce the uncertainty of living with SCD.

Find social support groups

Having a strong social support network reduces stigma and uncertainty about SCD. Family and other personal support networks can help you make a better sense of daily life with SCD. Support groups of people in the SCD community can also offer personal advice on dealing with uncertainty. Other benefits of support groups are:^2,3

• Opportunities for a social environment
• Sources of encouragement and information about SCD
• Finding a role model or mentor
• Opportunities to be a role model or mentor

Educate yourself about the disease

One of the best ways to reduce uncertainty about SCD is to learn more about the disease. Ask your doctor questions about symptoms, treatments, and test results. Also ask them to provide you with resources you can read to learn more. When you know more about the disease, you can play a more active role in your healthcare. This can make you feel more in control of your well-being.^2,3

Volunteer and advocate for others

Volunteering in your community or becoming an advocate can help put your condition in perspective. It is easy and normal for your health to become your main focus. Helping others can expand your outlook and help you cope with uncertainty and stress. Improving awareness and education about SCD is also a great way to reduce uncertainty for others.³

Practice mindfulness and relaxation techniques

Uncertainty can contribute to stress, anxiety, and depression. Some ways to deal with this stress include:⁴

• Relaxing with deep-breathing techniques
• Meditation or yoga
• Staying well-rested
• Getting regular moderate exercise
• Practicing mindfulness to focus on the present moment
• Prayer or other spiritual routines

Develop a healthy routine

Sticking to a balanced daily routine can make you feel more in control of your health. Your routine can include a specific diet and exercise plan, if you choose. Talk to your doctor for help in setting up a personalized diet or exercise routine.

Your routine can also include a schedule that balances your work, hobbies, and social life. Following this routine can ensure that you devote time to yourself while staying connected to your social and work networks. This also helps remind you that SCD is only a part of who you are and that there is much more to you besides the condition.³

Talk to someone about your emotions

Many people find it helpful to talk to a therapist or someone you trust about your uncertainty. Find someone who will listen to you who helps to acknowledge that your emotions are normal and valid. Therapists or counselors can also help come up with strategies for coping with uncertainty and planning for future challenges.^3,5