My Suffering Has a Name: PTSD

At the CFRI Conference the schedule was packed with lecture sessions and networking. So, much so that you really had to picked which lectures interested you most and attend only those. There was no way to attend them all. There were two lectures that I felt very passionate about hearing; 1)PTSD and 2)Women with CF are Having Babies.

The one of most value to me after participating in the lecture was this idea that PTSD existed in parents with individuals suffering from chronic illnesses like CF. But more than that how I related to every. single. symptom. of PTSD. Heather Walter PhD, Director of Graduate Studies at The School of Communication, The University of Akron in Akron, Ohio who has a daughter with CF had read an article, Invisible Patient: Post Traumatic Stress Disorder in Parents of Individual with Cystic Fibrosis. (I encourage you to read the full article for further clarification.)

As she made her way thru the article she was astounded by how the article validated all the feelings she had since her daughter's diagnoses. The article focused really on the parents of those with CF and how the parents are often experiencing symptoms of PTSD such as re-experiencing, avoidance and arousal.

As I sat on the edge of my seat listening to her explain what each symptom was I was nearly moved to tears. She explained re-experiencing to include intrusive recollections and psychological distress. Avoidance includes selecting to make conscious or unconscious choices to avoid information or not to do some things. It also includes emotional numbness. Arousal includes hyper-vigilance, anxiety, irritability, anger, guilt, self destructive behavior and insomnia.

Wow.

I have been as honest on this blog about my journey with depression, loss, anger, self destructive behavior and even attempting to commit suicide as I could possibly bare to be. This is so real. The pain is so deep.

For so long I have struggled with a deep depression. Often times I was able to control it, to get a grip and function normally but my goodness there have been days, weeks and out-right long periods of time that I felt so alone. So misunderstood. Unheard. Many just say "pull up your boot straps girl its never going to change" or just diagnose it as depression, which part of it is. However, depression is not all of it. Anti-depressants doesn't help all of it. Because CF at this point is not going away.

As I continue this life with CF I am re-experiencing often times multiple times a year psychological distress. The things or events that have been traumatic I get to relive over and over. I have and do avoid information and/or things that I need to do in order to simply stay alive. My anxiety at times is beyond rational, I have issues with anger and have taken anger management classes to help control it and of course the self destructive behavior in arousal. I am beyond overwhelmed.

After Mrs. Walter ended her lecture I hurried up to exit the conference room in hopes to catch up with her as I wanted to talk to her more about PTSD, but from the patients perspective. You know us CFer's who are in the thick of this mud. She was awesome and we both agreed that there needs to be more conversations about this, more open dialogue for both parents and patients in the early years. So, that the medical teams can be informed that this is a real issue for some. So, that those who recognize these symptoms in themselves may be helped by simple self care; like rest, exercise, friends, family and avoiding destructive behaviors. The fact of the matter is that many think of PTSD in relation to post war trauma or rape victims, but it is present as a response to many other life events. PTSD can be just an episode or brought on by a new event that triggers them such as having a PICC line placed or a hospitalization.

Later on as the conference began to come to an end a woman pulled me aside. Asked me if I felt comfortable talking about my journey with depression. I was so glad she reached out. She is a mother of a child with CF who like me has struggled in this area greatly. After the conversation, a few tears from us both and a promise to stay in touch it left my mind whirling. In fact, I have been consumed by the fact that if the two of us (this women's child and I) have struggled so much I am willing to bet there are others out there. Who are at their wits end or nearly there.

Depression and PTSD are linked and often go hand-in-hand. I have been pouring over every piece of information about both depression and PTSD I can find. While I feel like I am currently in a good place with minor episodes of depression from time to time, I can't begin to explain how alone I felt during my teenage and early twenties, when I believe I suffered the most. I don't want anyone else to be alone. I want them to know that they can come out happy, fulfilled and loved.

I am determined now more than ever to be a voice. I don't know where this path will lead me but I do know that this fight should not be done alone in silence where the darkness can creep in. The suicide rate in young adults is high enough and I am thankful I didn't become apart of those numbers. We as a CF/Chronic Illness community need to be diligent in diagnosing this and finding ways to help treat it because it is a life-long battle.

This conversation is simply beginning.

~Doodlin'