Living with sickle cell can bring up many different feelings, such as:
- Sadness because you can no longer do everything you could before getting sick.
- Anger because you are sick.
- Relief at having a diagnosis for your symptoms.
- Confusion because you don’t know why this happened to you.
- Fear because of the overwhelming task of managing your symptoms.
You may feel these emotions because of sickle cell, but negative emotions can also make your symptoms worse. By learning how to manage your emotions, you can limit the negative impact of sickle cell on your overall health and life.
Identify Your Emotional TriggersBack to top
Emotional triggers stem from negative experiences in life that have a lasting impact. Emotional triggers refer to anything that sparks a strong emotional response, no matter what your current mood might be. Nearly everyone will have emotional triggers, but they can vary from person to person. These might be unwanted memories, how someone else treats you, or topics that make you feel uncomfortable. The following steps can help you identify your emotional triggers.
Know about common emotional triggers. These can include social events or memories associated with:
- Feeling out of control or helpless
- A loss of independence
- Being treated unfairly
- Rejection and abandonment
- Feeling trapped or smothered
- Having a lack of security
Pay attention to your physical response. Emotional triggers can cause you to experience:
- Rapid heart rate and elevated blood pressure
- Shortness of breath
- Sweaty palms
- Shaking or dizziness
- Upset stomach
- Extreme fatigue
- Worse pain symptoms or flare ups
Start Managing Your EmotionsBack to top
Once you have identified your emotional triggers, you can start to think about how to handle or prevent them:
- What has worked for you in the past?
- What has calmed you down, or helped you get through difficult moments?
- Do you have any ideas about what might help you in the future when this happens?
To get started, here’s some tips you might try:
- Don't forget about the basics. Be sure to take care of your body's basic needs, including food, sleep, water, and medications. Having basic needs met can help dampen strong emotions.
- Include strategies that have been successful for you in the past.
- Start with a strategy that will help you calm down, soothes you, or gets you focused, such as a mini-relaxation exercise or talking with someone supportive.
- Don't forget the power of positive emotions for managing difficulties.
- Writing down strategies that you want to try can help you remember As you live with symptoms of sickle cell, you may feel frustrated that your family and friends don’t understand your symptoms. This can provoke negative feelings of uncertainty or self-doubt. It is important to remember that what you are feeling is real and you have the right to seek the help you need. Visit our pages on Reframing and Talking to Your Doctor to learn more.
Do Things You EnjoyBack to top
When experiencing sickle cell symptoms, enjoying yourself may seem impossible. Because of your sickle cell, you may only be doing what is "necessary" like chores or work, but not taking time for yourself. Thus, going to work, running errands, paying bills, and taking care of cooking and cleaning are made a priority, while hanging out with friends, reading a book, spending time on your hobby, or even taking a long bath are skipped. This makes for a life that is not terribly enjoyable. For some, sickle cell symptoms have caused them to reconsider who they are and what they can or cannot do – this can have an impact on one's self-image and sense of purpose in life. Engaging in pleasant activities is an important part of life and an important part of sickle cell treatment.
Enjoying yourself may seem selfish at first because you feel that you should spend your time taking care of your family, job, or chores. But what may be missing from your life is time to take care of you. Spending some time doing pleasant things may help you take control of your life by balancing your responsibilities with activities you enjoy. Think about your physical and emotional energy as batteries. When you use energy to take care of daily tasks, energy drains from your batteries. If you recharge both your physical and emotional batteries, you may be able to do more for yourself and others.
Taking time for some personal enjoyment helps to rejuvenate both the body and mind. It may also help you:
- Become distracted from your symptoms
- Improve your mood
- Connect with other people
- Add balance to your life
Schedule Pleasant ActivitiesBack to top
For those who do not have a chronic illness, getting chores done first and then doing something enjoyable might be easy. But for people with sickle cell, doing chores may mean that there is no energy left for a fun activity. Having a balance of work and pleasant activities is important. To help you find a balance, you may need to schedule pleasant activities in your calendar just like work appointments.
STEP 1: Decide what to do
Pick activities that you enjoy, for example:
- Creating or enjoying music or art
- Watching a movie or favorite TV show
- Finding a hobby, doing crafts, bird watching or playing computer or board games
- Playing with family members or a pet
- Spending time with a friend, either in person or on the phone
- Taking time to write a letter or email to an old friend
- Reading a good book or something to make you smile like jokes or comics
- Getting some exercise, such as taking a walk outside or dancing
STEP 2: Tailor activities to your needs
If your favorite activities seem too hard now because of your PASC symptoms there are ways you can change the way you do it:
- Do it for a shorter amount of time
- Break it into smaller stages
- Pace yourself and rest at set times so you don’t overdo it
- Do it with a friend or family member who can help you if you need it
STEP 3: Start small and set realistic goals
Even 5 minutes a day can make a difference.
STEP 4: Put it on your calendar
Once you’ve decided what you want to do and when, putting it on your calendar can help you stick with your goals. Setting reminders like phone alerts can also help.
Overcome ChallengesBack to top
Enjoying yourself may seem like a low priority to you when there are many demands on your time and energy. But feeling recharged benefits both you and those who depend on you. Below are some ideas to help you to overcome barriers and challenges that you may face.
- “I don't have time for myself”—Just as a car needs gas to run, you need to recharge and refuel your mind and body. Pleasant activities can be that fuel! Just taking five minutes to read a funny cartoon or a note from a friend may give you a little boost and help take your mind off your symptoms. But if you don't take time to renew yourself, you may exhaust yourself and run out of gas.
- “My symptom is more serious than a funny cartoon”—Engaging in pleasant activities is not meant to cure sickle cell symptoms. It is designed to bring balance to your mind which is likely to be focused on your symptoms. If pain gets processed in the brain against a background of pleasantness rather than negative emotions (e.g., despair, anger, anxiety, frustration) it can be experienced as less intense.
- “I want to take time to enjoy myself, but other people need me”—Sometimes people may need to impose on your time. To protect this time, invite them to join you in an activity or you may want to set up clear rules about how much they can expect of you and when. Tell them you will be able to help them more if you have time to recharge yourself.
- “I'm having trouble enjoying myself”—It can be frustrating when you are not enjoying your favorite hobbies the way you used to. Or you may be struggling to find new activities to enjoy. Try asking friends and family for suggestions or see what's available in your local community. Make sure to give yourself enough time to try new things. You may find:
- New activities you enjoy as much as your old hobbies
- New ways to enjoy your old pastimes
- New levels of energy may allow you to do more