To be completely honest and transparent, I have never been the type of person who writes in a journal or diary (much less a blog!). I never wanted anyone to know what I was thinking or feeling. I like to think of myself as a strong person, but we all go through times in our lives that completely break us. I hope that sharing my struggles -- and what has helped me -- will help others.
People living with the daily health struggles of cystic fibrosis also deal with so many other issues. It’s easy to get jaded and blame ourselves. We have daily battles with depression, social pressures and anxiety, family issues, the loss of loved ones, starting and keeping personal relationships, etc. I’m sure you can add to the list, because I can! Recently, I received healing words that I want to share with you.
Having a diagnosis with CF so late in life really threw me a curveball. To say that it was life-changing is an understatement. It ultimately led to my first marriage failing. I still get emotional talking about that period in my life.
At the time of my diagnosis, I realized that I needed to seek professional counseling, but it seemed that every psychologist and therapist I contacted had the same work schedule as me, didn’t accept my insurance, or was not accepting new patients. I didn’t want to burden my friends with how I was feeling. My husband at the time told me to get over it and get back to my normal life. My parents couldn’t handle their own feelings much less bear to hear about mine. I felt like I was barely keeping it together, and I slipped into a deep depression.
I tried to find ways to distract myself and forget about CF as much as I could. Music has always been an escape for me. I would “run away,” driving for hours just listening to a playlist of songs that took me somewhere else. I pushed down my feelings and emotions, became pessimistic, and muddled on for years.
I’m an only child in a small family. I had one friend closer than a sister, Michelle. Michelle and I were always together and talked daily. She was there and available for everything: the good times, the bad times, hospital stays, vacations, etc. Two years ago, Michelle was diagnosed and quickly died from stage 4 cancer. That was my chance to be by her side, just like she was always by mine. I was holding her hand as she died.
A few days later my dad fell off a ladder and suffered traumatic injuries requiring surgery and a long recovery. I stayed with my parents to help my chronically ill mom with his care. During this time my uncle had a stroke, and I had to assist my aunt in getting him care and placing him in an appropriate facility.
With so many things happening so quickly, I felt broken and very overwhelmed. There were nights that I completely broke down in my current husband’s arms, because I didn’t think I could handle my grief and being pulled in so many directions. There was no time or chance to deal with the traumatic loss of my friend. I had to push down my emotions just to accomplish what I needed to do. I knew that it was time to get professional help and deal with my grief when I still cried every day and at just the mention of Michelle’s name almost a year later.
I started feeling like I had let all these repressed feelings and grief build up too long. I had not dealt with my late diagnosis of CF many years ago and the more recent loss of my best friend Michelle. I really felt like I was going to explode.
I started talking to the social worker/therapist available to me at my CF care center. Shaina was exactly what I needed. She gave me exercises and activities to get to the bottom of my feelings and helped me understand that it’s OK to cry when I need to.
At one session, Shaina said something profound: “Autumn, have you ever stopped to think about the fact that none of this is your fault?”
This is not your fault. Those words hit me like a ton of bricks. I think I even stopped breathing while I processed that. I was speechless.
Of course, I had never considered that CF is not my fault. Most of the bad things that happen to us or our loved ones are not our fault.
Fellow CF community blogger Jenny Livingston also commented on this topic in “Real Talk Tuesday: Stop Blaming Yourself!” She talked about the innate tendency to want to assign self-blame and guilt. I even find myself (or my family/co-workers) doing this when I get sick. We have to stop doing this to ourselves and others.
Since that session with Shaina, I have a better attitude, and I don’t cry daily. Of course, I still experience sadness from time to time, but I feel that I am better equipped to handle what comes my way.
I have always used music to escape and distract me -- a beautiful drive on a sunny day, with the sunroof open, windows down, and the music loud. But music can also be therapeutic and inspirational. Have you ever had a song touch your heart? Maybe you had a melancholy song make you sad? Your favorite song made you get up and dance?
We all need someone to point out how strong we are or remind us what we are capable of. I was sitting on the couch at 3:30 a.m. in the darkness of my den, watching TV, unable to sleep because of the steroids I was taking. “Rainbow,” a song by Kacey Musgraves, was being sung by a contestant on a show. I had never heard this song before. The lyrics touched my heart, and I found myself sobbing. Sometimes you need a message of hope in dark times or when you have weight on your shoulders.
“Let go of your umbrella, ‘cause darlin’, I’m just tryin’ to tell ya
That there’s always been a rainbow hangin’ over your head.”
Do you have a go-to song? “Rainbow” is now mine. It helps me remember I’ve always had the strength inside to deal with any struggle.
Just remember: This disease and most of the things that happen to us are not our fault.
Yes, we still have to deal with the daily grind of pills, meds, treatments, pain, depression, doctors, hospitals, etc.; but, we don’t have to add on the extra emotional burden.
It’s not easy, but try to find inspiration, escape the pessimism, and remember how strong you are.