|Born This Way|
To look at me, you would not know that my organs are completely reversed. You can’t see the scar from the middle of my chest to the middle of my back from a lobectomy. You can’t tell that my eardrums are scarred or that I’ve had sinus surgery. You can’t see that my lungs have irreversible lung damage due to multiple infections. You can’t “see” that I have PCD. But not being able to see an illness does not mean that it is not real.
Throughout our lives we deal with people who don’t believe us or who can’t (or won’t) accept that we have health problems because we look fine. I once had a co-worker/’friend’ who sat in the cubicle next me call me out, literally. She called me on the phone and asked me if I could go into the bathroom when I needed to cough because it sounded so gross and she didn’t want to hear it. I was shocked and angry. I curtly told her that I would be happy to go to the bathroom if she would be willing to do my work, as I would be in the bathroom every 10 minutes. I also told her that her self-induced smoker’s cough didn’t sound any better. I hung up the phone and went into the bathroom and cried for 10 minutes. I washed my face, then went back out and did my work. Needless to say our friendship changed after that.
That was a hard lesson in human nature. Now I try to surround myself with people who understand or who are willing to accept who I am and what I sound like. I can honestly say that I am at a point where I don’t feel like I have to defend or prove my illness to anyone. I have to do my treatments and take care of myself. That does not mean that I am not self-conscious, though. I still find myself instinctively trying not to cough in public.
Another big issue is guilt. I recently read a blog post from another PCD pal who talked about that very subject and it hit home for me. The guilt is real and likely a normal reaction for those suffering from chronic illness. As a wife, I feel guilt over my relationship with my husband. When I can’t get things done, I feel like a failure or that I am not holding up my end of the bargain. I worry that my limitations may be dragging him down. As a mother, I feel guilt over not being able to do everything with my son that I would like to do. I dread that fact that I will inevitably crash after our activities. I also don’t want him to have the burden of seeing me sick or being embarrassed by my cough or treatments. In my heart I know that the worries and the guilt are mine alone and that my husband, my son and my friends don’t feel this way, but that doesn’t stop these fleeting thoughts from haunting me at times—especially when I’m not feeling great.
Chronic illness is hard work. Not only do you have to battle the physical realities of your illness, but you have to manage the emotional consequences, as well. It’s a constant process to work hard, stay positive and maintain a good quality of life. For me, it helps to talk about these things and I am grateful to the PCD community for being a safe place to share feelings with others who truly understand.