Ask The Advocates: How Has Cystic Fibrosis Affected Your Mental Health?
Many of us are very familiar with the way cystic fibrosis (CF) can physically affect our bodies. However, in addition to cystic fibrosis impacting our lungs, pancreas, liver, sinuses, and more, it can also affect our mental health. CF is time-consuming, which can impact our relationships with others. Infection prevention methods can be alienating. Oh, and worrying about our physical health can add excess stress to our mental load, too.
We asked our advocate team how cystic fibrosis has affected their mental health. Read on for their responses:
Lack of control causes distress
Response from Katelyn Harlow
I struggle with anxiety, depression, and I have some obsessive tendencies. I see a therapist and take mental health medications to help me cope with the heaviness of this illness. The inability to exact control over my body has caused me a lot of distress as my illness has progressed. However, with the help of my faith, family, friends, and therapist I have healthy coping mechanisms and am in a good place right now.
Response from Marieliz Landa
I have moments of depression, anxiety, and OCD. It’s overwhelming how quickly things can go from bad to worse and how quickly you can be feeling okay and then you’re not. I get anxious when I see another sick person because it can mean the end of my life.
My OCD is bad because I am so paranoid about germs, bacterias, and more, so I am constantly cleaning and doing it several times a day because if I don’t I hyperventilate. I get insomnia because there are moments where my pain is so bad, I can’t sleep. My mental health is important to me because cystic fibrosis already gives me times of loneliness that I need to do my best every day to make sure my smiles are genuine.
Response from Cheriz K
As a child, I dealt with some depression and survivors’ guilt for a couple of years as many of my friends passed due to CF as I continued to get older. Two of my best friends (with CF) both passed within two years of each other when I was 10 and then 12 years old. Eventually, I dealt with the guilt and feelings and was able to focus on my life and live more in the present. However, survivor’s guilt is still something I can struggle with time to time.
I notice more anxiety as an adult as I add more to my plate: career, spouse, kids (foster parents). I struggle with the balance and sometimes I need to take a step back and re-evaluate. My social worker at clinic and my CF care team have been very helpful in addressing all emotional and mental health issues.
Anxiety and depression
Response from Misty Roussa
Cystic fibrosis has affected my mental health in a huge way. My anxiety and depression have increased, so I am in therapy and on medication. It is a battle that I deal with daily but I am making big progress. In the beginning, I sort of nose-dived into depression, anxiety, and a lot of guilt about our son's diagnosis. No amount of people, even my husband, could have convinced me that it was not my fault. I was scared of what CF would look like for him.
Our worst nightmare had come true and, from there, I began to believe that anything bad that COULD happen, WOULD happen. I developed health anxiety, which was foreign to me before experiencing it. Things for me mentally have calmed down considerably, but it is a struggle from time to time, especially when he isn't doing his best.
How has cystic fibrosis affected your mental health?
There is no right or wrong answer here. Whether you're a person with CF or a caregiver or loved one of someone with CF, you may experience some of these emotional effects. We would love to hear more about how cystic fibrosis has affected you and your mental health. Consider sharing your story with us to help spread awareness of all the ways CF impacts our lives.
Have you (or a loved one) been experiencing any negative side effects from Trikafta?