Navigating the intersection of transgender health care and cystic fibrosis care has had its ups and downs, but I've become an effective self-advocate and intermediary between my two health care teams.
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Having cystic fibrosis as a Black man means being left out or misunderstood. I want to be heard, acknowledged, and represented.
Summer 2020 is simply not like the others. For me, a teacher and CF spouse, the unknown is taking away some of the normal summer bliss. But it's been hardest on my husband who feels he is holding us back as stores and restaurants gradually reopen.
Being in touch with your emotions can be considered a negative when you're a guy. For me, it's been a tremendous help in dealing with my cystic fibrosis and the loss of my sister to this disease.
Spending summers at sleep-away camp helped me become more responsible, and allowed me to see CF clearly and accept it.
Cystic fibrosis, life expectancy, and my struggle with the “seize the day”-paradigm.
It may seem odd to some, but I'm finding a bittersweet pleasure in taking care of my aging parents. As a 45-year-old woman with cystic fibrosis, I feel lucky to be alive and able to repay them for years of doctor visits and at-home treatments.
I've found it hard to cope with CF as I have gotten sicker, and loneliness comes about in both physical and emotional ways. Even though the people in my life may not know exactly what I'm going through, I'm trying to let them in on what I'm feeling.
Taking a step back and taking a break from social media helped me to realize that it's okay to have a definition of health and wellness that looks completely different from anyone else.
Relationships can be tough no matter what. But I have found that when you have cystic fibrosis, relationships require these three elements.