June is National Posttraumatic Stress Disorder (PTSD) Awareness Month, and recently, Jennifer (aka sortaborderline) spoke about her personal experiences with the neurological condition. She talked all about learning to roll with her triggers, leaning on her family and PatientsLikeMe members for support, and recognizing the relationship between her fibromyalgia, myalgic encephalomyelitis (ME/Chronic Fatigue Syndrome) and PTSD. Check out her full interview below.
What went through your mind when you were first diagnosed with PTSD?
I already thought that PTSD was the problem, but it was such a relief to know that I wasn’t “losing my mind.” I have a legitimate disorder, not something that I can wish away or just “try harder” to ignore or push through. I actually felt empowered. Now I knew for sure what was going on, so I could work on treating it. Putting a name to the disorder really helped take a lot of the fear out of it for me. When I am triggered, I know why and I know that it will pass eventually. Just that little bit of information gives me so much more power over it as opposed to before when I didn’t know what was happening.
What have you learned about living with PTSD in the years following your diagnosis?
For the most part, I have learned to roll with it. Not that it is easy or that learning that hasn’t been difficult. I have learned that it is okay to share with my support system when I am triggered and ask for help getting myself back to center. I have learned that it is okay to share how I am feeling with my husband. That was a big step for me. Not because he hasn’t always been supportive of me, he has. Because of my particular issues, it is difficult for me to trust people with my unfiltered self. I’ve learned that I can with him, and it has helped strengthen my marriage immeasurably. People on the Mental Health board at PatientsLikeMe have been incredibly helpful and supportive of me and I know that no matter how bad it gets, I can pour it out on the page in my journal and be supported. For one thing, it can be cathartic to get it all out on the page. For another, it helps me to get feedback. Sometimes all it takes is someone reminding you of the coping skills I have to help me get my bearings.
In addition to PTSD, you’re also living with fibromyalgia and ME/CFS – do you notice a relationship between your conditions? How does one impact the other?
My diagnoses are essentially intertwined. One can trigger the other. If someone is having a long or particularly painful ME/CFS flare, that can make a neuro-typical person anxious. For a person with an anxiety disorder, that is amplified. The pain from the ME/CFS is exhausting. All of those pain signals bombard your brain for days on end, and your brain gets tired. It makes it difficult to think, resulting in the bane of the CFS/ME sufferers’ existence, the dreaded fibro-fog. It is very difficult and emotionally draining, not to mention the effect it has on your sleep. It is difficult to use learned coping skills when you’re exhausted.
On the flip side, anyone with an anxiety disorder can tell you that there are physical symptoms when you’re triggered. With ME/CFS, that is amplified as well and can trigger a flare. Which can amplify the anxiety trigger. It can be viciously cyclical. Sometimes, I just have to rest. There is nothing else to be done. Rest, a good diet, and hydration are the best thing to break it sometimes. If anything, I have learned to pay attention to subtle changes in my body or mood so that I can try to mitigate flares and triggers whenever I can.
You mention a “normal” mask on your PatientsLikeMe profile – can you share what means for you?
I am a mother of two children, I am a wife, a daughter, an aunt, and a granddaughter. I am trying to build a career and lead a full life. People depend on me. I have to “fake it until I make it” a lot of the time. It is difficult. It is nice to be able to take off that mask and be frank about what I am dealing with in the safety of the PatientsLikeMe Mental Health forum. I truly believe the help and camaraderie that I have found there has helped me to maintain a stability that I didn’t have before I found it. I feel much less alone in my struggle, even when in mid-episode, and as much as my “in person” support system is helpful, sometimes you just need to talk to someone who has been where you are. It is indispensable.
How have the connections you’ve made with others in the PatientsLikeMe community helped you to take that mask off?
I am not afraid of my symptoms anymore. I am not afraid to let my feelings out a bit more. I am not afraid to reach out and ask for help, nor am I afraid to offer help to others. Even a little note of support can help pull someone back on the path they want to be on. People on the forum have done it for me so many times. Having a cheering section helps you get the strength together to keep fighting. I know that, and I offer as much support as I can to other members because it matters. I feel like I matter. Even when my symptoms are at their worst and I feel weak and small, I know that a note of support to someone else matters. Sometimes when you can’t bring yourself to matter to yourself, mattering to others can keep you going until you can.
What advice would you give to someone who has just been diagnosed with PTSD?
Don’t be afraid. Don’t let negative stigma regarding mental illness keep you from getting help. Our disorders are just as valid as physical illnesses. They need treatment in order for us to function and live our lives. Therapy was absolutely essential to getting me stabilized. It truly helped me to manage my disorders and start living again. If you don’t “click” with the first therapist, try another. When you find the right fit and do some hard work, it will make a huge difference for you.
I have found the tracking tools on PatientsLikeMe to be immensely helpful, especially in the beginning, for tracking symptoms to see if there are patterns in my triggers and symptoms, which has helped direct my therapy and coping techniques. The medication tracker has been helpful as I am one of those super fortunate folks who seem to have a proclivity toward weird side effects from medications. That way I can remember what we have tried and how it worked. Visit the forum. Check out my journal if you want, it’s public. There are folks who have just hung out and read the forum for months before joining in, and that is okay. It helps to see that others think like you and understand what you’re dealing with.
Most importantly, don’t give up. It can get better.