Getting in Tune With
Trying to understand yourself and your emotions is a process—especially when those emotions feel big and overwhelming. Tack that onto living with cystic fibrosis (CF) or caring for someone with CF and those feelings may be even more complicated to decode. Feeling sad or stressed is not always a cause for concern. Uncomfortable emotions can be totally normal. But the better you know yourself and your emotions, the easier you’ll be able to access support if you need it.
Understanding stress and anxiety
Stress is one thing. Anxiety is another thing. While both stress and anxiety have similar symptoms, such as fatigue, muscle pain, irritability, and trouble sleeping, the causes of each are different.
Stress is brought on by external factors and will usually subside once the stressful situation is resolved.
Anxiety, on the other hand, is persistent and may cause a person to have an internal emotional reaction that doesn’t reflect their current situation.
Amber Dawkins, an athlete and parent with CF, stretching before her workout.
Healthy sleeping habits, physical activity, and a balanced diet may help those dealing with stress OR anxiety. However, if ongoing anxiety is impacting a person’s ability to function day to day, they may need to work with a mental health professional to appropriately identify and manage their symptoms.
Understanding sadness and depression
There’s also a big difference between sadness and depression. There are many potential symptoms of depression—and sadness is one of them. But while sadness may come and go, depression can last for extended periods of time and can disrupt a person’s ability to find enjoyment in the things they normally love. Depression is a medical illness that must be clinically diagnosed, so it's important for anyone feeling overwhelmed or hopeless to report those symptoms to a healthcare professional.
Work with your care team to decide how you can approach your physical and emotional wellness holistically
Individuals with CF and their caregivers experience higher rates of depression and anxiety. These conditions can impact a person’s ability to take care of themselves or their loved one’s physical health and should be taken seriously. Guidelines by the International Committee on Mental Health in Cystic Fibrosis recommend that certain individuals in the CF community be screened for depression and anxiety to ensure that they are not overlooked.
My experience with depression and anxiety
Maggie shares some of her personal experiences being a single mother to her child Coco, who is living with CF, and recalls how she managed to push through some tough times after being diagnosed with anxiety and depression.
The story below is based on Maggie's personal experience raising a child with CF and should not be considered medical advice. If you have any questions or concerns about your mental health, please contact a medical professional.
Building a self-care routine that works for you
“Life can be challenging when you start a new family and
sometimes even more so if you have a child with special needs. For me, going through a divorce when my children were little was very tough. Eventually, I was diagnosed with both anxiety and depression that worsened when my beloved daughter Coco was diagnosed with cystic fibrosis at only 2 and a half years old.
Looking back, I now see that over the years, as a parent of a child with CF, I've adopted a handful of habits that have helped to keep me on my feet, fight caregiver stress, and even prevent burnout. So, I've decided to share with other parents and caregivers of loved ones with CF what has worked best for me:
Remember—to take care of others, we must start by taking care of ourselves. In my case, therapy and medication for anxiety and depression were temporary, yet both gave me the strength I needed to return to my happier and more productive self. Talk to your doctor about what may be right for you.
Another thing that I found useful was to have my vitamin levels checked; some levels were very low. I worked with my doctor to create a plan for adding vitamins to my daily routine and it really helped to improve how I was feeling.
Exercising is another thing that helps me cope with the ups and downs of being a caregiver. I enrolled in a Zumba class at a local gym, and it has made a huge difference in helping me deal with anxiety. The energetic Latin rhythms combined with the dance moves really lifted my mood!”
Striking a balance
“As both a caregiver and single mother, it has been important for me to find balance in my life, and that includes making time for myself and for activities I enjoy as often as possible. These activities give me a breather amid the hustle and bustle and responsibility of taking care of a person with CF.”
Finding moments for meditation and strengthening your spirituality
“Personally, I try to take time to meditate and pray daily. One of the things that helps me when I'm feeling down is meditating in a special place. I used to go to a small meditative chapel where you would meditate in silence. Readings on meditation have been very helpful for me as well.”
Spending time with family and loved ones
“Without a shadow of a doubt, my strongest support system is my family. They have been my fortress in every aspect of my life over all these years. They have given me respite in all possible ways, like spending time with Coco at the hospital so I could go home, cooking a meal, helping with cleaning, and taking care of my son when I was in the hospital with Coco.”
“In my experience, being able to say no to events and financial endeavors that could take away time and resources from my family was important when my kids were younger. As a single parent, I needed to be present for my family. For this reason, I especially made an effort to avoid activities or events that would take away from my children's lives. Now that my children are adults, I have been able to engage more in the community and attend events that I enjoy.”
Having a backup plan
“Having a backup plan provides safety and security, and knowing we're prepared for unexpected eventualities allows us to be more flexible. So I try not to get stressed out if things don’t go as planned, and just continue with the backup plan. One example is when my family and I had to change holiday plans due to Coco's health. Having a Christmas dinner and celebration at the hospital as a family in Coco's room was very rewarding.
The most important piece of advice I can offer is to remember to take care of yourself. Like safety instructions on a plane, the only way that you can take care of another person's wellbeing is to take care of yourself first. You just have to discover what works for you to help you find your measure of inner peace.”
Please remember to contact a healthcare provider with questions or concerns about your mental health.