I’m going to be presenting at a conference in February on living with courage and resilience with PTSD. While working on my presentation, I began thinking about the effects this illness has had on my friends and family the last seven years.
One of the reasons I continue to write and share is because my PTSD symptoms still have a pretty good choke-hold on me and I want to bring awareness to complex PTSD and what it feels like to live with it every day. As with many mental illnesses, PTSD can be fairly invisible on the outside. The shift in my functioning once I couldn’t repress my memories any longer was pretty dramatic. But physically there was no altered appearance. Often with such a sudden onset of symptoms in an illness we expect to see changes on the outside. Most of us, are used to seeing the physical manifestations of being ill (a pained look, a limp, weight loss, pale) my friends and family were having a hard time understanding what was going on with me.
I had always been the master of wearing many masks, and deflecting any conversation away from me, always with a supportive smile for everyone, and a reach out to me if you need something demeanor. Never, expressing a need for the same kind of support of my own. But when I couldn’t hide my illness any longer, my friends wanted to reach out and help me. I couldn’t help them, help me because I didn’t know what I needed. All I knew was that I was going crazy, and there was nothing anyone could do to help me. I didn’t need food, company, or phone calls. I needed someone to stop the madness inside of me. One day, while haveing breakfast with a friend, she expressed her helplessness at not knowing anything about PTSD and asked me “what does it feel like inside?” That question stopped me for a moment. I couldn’t find the words to tell here or to explain it, so I wrote a poem (My PTSD) and that was the beginning of sharing some of my writing, but more importantly, it gave me a safe and effective way to share with others and help me begin to understand in a fairly objective looking way how PTSD affects me on a day-to-day basis, and how the symptoms changed my way of living in the world.
My symptoms include (not limited too) flashbacks, concentration issues, becoming overwhelmed and my brain shutting down, not being able to make choices, anxiety/depression, hypervigilance, and sensitive to the triggers that start the whole shebang of symptoms. We use the term, triggers, triggers everywhere. Like a lot of people, I’m triggered by anniversary dates and other events, but because my situation was so pervasive and went on for so many years, in so many places often regular outside noises can initiate a flashback. The wind can blow a certain way, or fireworks, or a car backfiring, even the moon can bring on flashbacks. Ugh! right?!? But those symptoms and my reaction to them often involve my family and friends to recognize what’s happening and patiently either wait or help me through them. For a rock of a person, who never needed any help in any situation…well, you can imagine how discombobulating that can be for myself and others.
Unfortunately, my symptoms have left me with the inability to work. I went from having a wonderful career with the fringe benefits that provided me with some semblance of comfort for the future and the ability to provide for my family to only being able to work about 2 hours a day…on a good day. I simply can’t concentrate, do more than one task without interruption and my startle response can be off the hook sometimes. The one thing that doesn’t seem to be damaged is my ability to use my higher level thinking skills. I have been fortunate to be able to continue to help with marketing ideas for small businesses, and help with recruiting efforts. And also, I’m able to write and have the desire to talk about this topic in public. As long as I’m careful and don’t push past the point of my brain shutting down, I can recover and have a pretty good day. If I do push myself then I can be down for the count for several days in a row. It seems as if my symptoms (depending on the time of year) can start a chain reaction, so I needed to learn to work within my deficits. This isn’t easy or comfortable for me and because I’m still pretty new at learning how to work within my symptoms, I can find myself becoming frustrated and angry at my PTSD! Honestly, most days, if I’m going to be honest, I am VERY angry at my PTSD. But then I settle down and think about what I want for my life and try to rest and reset.
At the beginning of my PTSD symptoms, my family was just as confused and upset as I was. No one knew what was happening and everyone was handling it in their own way and alone. Our once “the Four of us against the world” family unit had deteriorated into everyone for themselves in a ship that was sinking faster every day. It was a shift in our family dynamic that none of us ever expected and we didn’t know enough at the time to get help for the family unit.
My symptoms have definitely affected my family and they still do today. I went from the grounded beacon to becoming almost totally dependent on them. I have been able to maintain a “mom role” and thank goodness my children are now in their twenties, but it’s difficult to know that my daughter is not only my daughter but one of my caregivers. She is the one who can tell right away if I am having a “bad day.” Among other things, she knows where I can look on a menu so I don’t get overwhelmed by choices, she can tell if I am in over my head and can tell if I’m triggered. My son, who I think had the biggest problem adjusting because mom wasn’t mom anymore, has grown into taking the responsibility of managing anything that is concrete and sequential. He’s a teacher by profession and he feels best when he can problem solve a problem for me. My husband has been wonderful and supportive and picked up the slack when I couldn’t. But our dynamic has changed too. He often sleeps in another room because my screaming nightmares, wake him up. He has to get up at 4:30 am for work every morning, so it’s imperative that he gets his sleep. But that has had a huge effect on our marriage. These are just a few examples on how PTSD symptoms have affected my family and friends.
It’s all okay, and it’s all not okay. My family dynamic has changed, and that happens. When you are the reason for the change it’s a slippery slope from feeling like a burden to feeling like this is what happens in life and we adjust. I also want to be honest when I speak and write on living with courage and resilience. Like any disease, PTSD doesn’t just affect one person, it affects all those in your life who care about you and love you. It’s something I’m aware of every day, it’s something my family and my close friends are aware of and it can be an uncomfortable, but never dull life. I’m sure if asked, my family may pick dull….but maybe not.