There are many facets to life with cystic fibrosis, from a patient's perspective. Not just dealing with the day-to-day difficulties, but the uncertain future, as the disease's progression cannot be predicted. This can lead to a variety of emotions, from anger to depression to anxiety and beyond.
For a long time, I only thought about how I felt about things. As a kid, I didn't realize or care much about how my parents felt about CF; I was just mad at the world that I won the genetic lottery of bad fortune. Then, as a young adult, I turned to remaining stoic and unflinching in the face of the unknown as a way of hiding my CF progression. After I got married, I still held on to the fact that I alone was going through this illness. Only recently have I really started to look at how my illness affects those closest around me: my wife, son, and immediate family.
Every progression or hospitalization can be a roller coaster of emotions, almost like the five stages of grief. First, it's denial that I am sick, which leads to anger that I am in the hospital. Then I try to bargain with my doctors to let me out, probably sooner than I should be released. Inevitably, this doesn't work, leading to some depression. Finally, I accept that I cannot change things for the better. All the while, my wife is right by my side, dealing with the same emotions. Only she worries about our life outside the hospital as well, trying to hold everything together while still putting on a good face for me. It must be exhausting! I didn't see it for a long time.
It's easy to say that I am the one who is directly affected by this disease, going through the pain, shortness of breath, endless hospitalizations, and debilitating illnesses. But, with time, I have realized how much my CF affects those closest to me. They are on the roller coaster with me and are helpless to stop it. They feel all the same emotions, along with the anxiety of what may come next. “Is this the last exacerbation? Will Chad not be able to carry on? What will happen to the life that we built?”
These endless and unanswerable questions can only lead to anxiety. And this anxiety for my loved ones is hidden, one that's not talked about or shared because it seems insignificant in comparison to me and my illness. I can only imagine how they must feel. But the real question is, why we aren't talking about this? I believe the emotional wellness of CF family members should be a focus for CF teams. If those closest to me are having difficulties, won't that affect my mental and physical wellbeing? I think that this should be talked about and discussed, out in the open and not hidden in shame as it appears to be.
Mental health has come into focus in recent years nationwide, and it has become a focus of the CF clinics; every patient needs an evaluation and resources are provided to help if needed. But why not for the spouse or parent? They are just as affected by CF, albeit from the bedside. They stand by and watch and support every day without having control over any of it. It feels only natural that being a co-pilot to this illness would become overwhelming at times. They should be able to share these emotions without feeling judged. We need to embrace these emotions and have these tough conversations.
The CF patient is only as strong as the people around them. If those people are having difficulties like depression or anxiety, then it needs to be addressed -- by the clinics and clinicians that are treating those with CF.
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