I grew up when the prognosis for cystic fibrosis was not positive and the life expectancy was short. Having been diagnosed at eight weeks, I haven't known a life without it. I grew up like many with CF: lots of hospital stays, lots of IVs, lots of visitors, lots of unknowns, and lots of trial and error.
Most hospital and doctors' visits consisted of breathing tests, medication refills, blood work, and questions about how I was feeling and was more directed towards how I felt physically.
There were no support groups, no mental health counselors, no real talks about how I was feeling emotionally and mentally, and certainly no one that could even begin to understand what I was going through.
The isolation was -- and is -- very real. I have the desire to want more and to do more, but my body just refuses to do so. And it really got me thinking as to how I could help others not feel so alone with this ever-changing disease. Unfortunately for me, I had a million other things thrown at me while trying to manage this disease, such as divorced parents, a broken home, and isolation from friends. I hurt so much growing up that I made it my goal to find a way to help others -- even if it was just temporary. My desire to be a counselor started when I finally understood that I didn't have to suffer the way that I had been for so long.
I have seen drastic changes in the CF community regarding mental health issues, and they have created such great opportunities for those living with this disease. Even though great strides have been made, it's still extremely hard to find a counselor that has experience with terminal diseases or even advice as to how to go about doing so. In the search for my own counselor the struggle still remains.
My goal is to fill a niche for those like myself, so those with CF or other terminal diseases can speak openly and honestly about an illness to someone who just might truly understand. There has been great research on the benefits of counseling and how it can drastically improve a persons' life.
Counseling can improve a person's state of mind while they are going through a challenging time just by helping them feel as if they are not alone in their struggles, can count on an unbiased opinion about topics and issues, and can draw on all the skills and resources that the counselor can provide.
What others may not understand is that those who are living with terminal diseases sometimes have very dark thoughts. Unfortunately, the topic of death is such a scary subject to talk about and suicide is so taboo. I feel that what people like me sometimes need is to know others understand these scary and taboo thoughts are actually normal and manageable. What is most scary is when those thoughts take control of your mind.
Growing up with CF, I accepted death as my reality from a very young age and talking about it was just normal for me. But, there are others who simply refuse to talk about death and that does not promote safe mental health, nor does it promote the willingness to open up to others about what they truly experience and feel almost every day.
I urge other CFers to seek help. I finally found a counselor that I mesh with, who doesn't just nod their head at me, who pushes me, who calls me out, and who sees my worth, and tells me that they are proud of me for getting up in the morning and continuing this everyday battle.
Too many people think that counseling is boring, not for them, or that the counselor just sits there without providing any real feedback. When I experienced that type of situation, I decided that counselor wasn't the right one for me. I am stubborn, headstrong, and I tell it like it is. I have had to deal with the possibility of death from a young age, and I am sometimes morbid. Sometimes life sucks, but if just ONE person can understand and get it, I feel like I'm not alone in this ever-so-isolating disease.
