The reward for trying to look your best -- even when you are sick -- shouldn't be people questioning whether you really have a serious illness. People with cystic fibrosis and other chronic illnesses need support and kindness, not second guessing.
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Having cystic fibrosis means that hospitalizations are nothing new to me. But as I get older, I am much more aware of all the events I'm missing out on — birthdays, concerts, and school field trips. So this fall, I decided to take my life back from cystic fibrosis.
Growing up with CF was hard, but my parents helped me learn how to cope by both encouraging me to fight and allowing me space to complain.
I hadn't realized the extent to which having cystic fibrosis helped shape me as a social worker, until I opened up to my coworkers about my disease. Through those conversations, I have come to understand that isolation causes many people with CF to struggle and that connection to others and a support system are key to coping with this disease.
Does Trikafta® increase the chance of pregnancy for women with cystic fibrosis? Can men regain their fertility on modulators? I recently had a candid chat with the chair of the Women's Health Research Working Group to find out the answers to these and other questions about reproductive health.
My son who has cystic fibrosis required extensive treatment as a toddler, which I believe had a traumatic effect on his mental health. With the help of therapy, I have helped him learn how to self-advocate and use coping strategies for his anxiety, starting when he was just 4 years old.
The challenges of living with cystic fibrosis can sometimes be overwhelming. When I hit rock bottom, I found that my faith in God restored me and has helped sustain me through difficult times.
Getting a double-lung transplant has been a life-changing journey. Along the way, I've had to deal with changes in my mental health and the struggle to keep my survivor guilt in check.
It's easy to fall into the trap of pitying ourselves and focusing on what is going wrong in our lives. Instead, spend your time looking for all the good things that are happening too.
It's difficult to manage cystic fibrosis self-care when you have a child with a disability. Don't pressure yourself to be like other moms. Just do the best you can. Your kids will value your efforts.