I write this piece with some humor. I have to. But, the topic is a weighty one, that many PTSD survivors will deal with in our lifetimes. PTSD can contribute to a variety of physical ailments, including compromised immune system response, and more frequent hospitalizations than the general population. Most trauma survivors I have spoken with have other related health problems, including chronic pain, fibromyalgia, migraines, heart disease, and neurological conditions among many others. For me, my immune response has been markedly affected, and bacterial and viral invaders have had many a party in my system. Here's how I coped with my PTSD symptoms while recently hospitalized with a severe infection (yay, superbugs!):
- Be Your Own Advocate: "I HAVE PTSD. IT AFFECTS MY HEALTHCARE AND I'M ASKING YOU TO RESPECT MY SPECIAL NEEDS TO ASSIST IN MY HEALING." You must speak up. I am no longer afraid to reveal that I have PTSD, and that it effects many facets of my healthcare. For one, I am terrified of IVs and blood draws. Terrified, at the level of panic attacks and loss of consciousness, and once, a seizure.
- Stand Your Ground: If a healthcare worker ignores your request to accommodate your special needs, insist. Be firm. Refuse care from that specific healthcare worker and ask for another if it doesn't improve. I have had issue with many phlebotomists. They assume "everyone" is afraid of needles, so they discount my severe vasovagal response. I had one barge in at 3 AM, turn on the lights, and rush towards me with a needle. Literally less than a 30 second response time for me to wake up to. I asked her calmly to slow down, and my reasoning. She ignored me, and rolled her eyes and grabbed by arm. I rang my nurse button, and hollered out the door for a specific nurse that had taken special care of my specific needs. Nurse Trish ran in, held my hand and sang to me in an outrageously loud and funny voice, and I made it through.
- Express Gratitude: Believe me, there are heroes all around who will take care of you the way you need. Seek them out and let them know how important they are to you. Nurse Trish was just one of these saviors for me, and I let her know what a tremendous impact and relief it was to have her take my PTSD seriously and care for me. If you express it, the right caregivers will understand just HOW IMPORTANT it is for your recovery.
- Let Yourself Be Cared For: I get it. Most of us survivors are warriors. We take care of ourselves. We don't trust. And for good reason, oftentimes. For example, this hospital stay was avoidable for me. I had doctors make various mistakes that delayed my diagnosis to the point it became life threatening. But then I also had doctors and nurses that saved my life. Without them, I wouldn't be here. I had to release some self control.
- Do What Helps You Heal, Even if it's Different from What's Expected of You: In the hospital, everyone expected me to need help getting up and around due to the severity of my illness, and strength of my medications, including morphine. I didn't. "This will knock you out," they would say. Not me. I'm pretty much always alert and its tough to disorient me with medication. Even with anesthesia. Anesthesia knocks me out, of course, but I wake up alert as can be. I take care of myself, and I'm on guard. And that's ok. That survivor mindset helps "me" heal. It makes me feel strong.
- The Topic of Sleep: Just like #5, you will be expected to sleep. Surely, your severe illness has exhausted you? During my hospitalization, I felt better staying awake and alert, and sleeping minimally, generally a couple hours here and there per 24 hour period. I slept once for an 8 hour stretch, and it was a disaster. I awoke disoriented, riddled with memories of my nightmares, and foggy brained. If you can sleep, by all means, that's the best path towards recovery. But if you can't? Don't sweat it. Rest. Relax. But do what works for YOU. And don't be embarrassed to stream Netflix at 3:00 AM. It's your right to your own recovery.
- An Attitude of Gratitude: So corny. So true. I had and have anger about my recent hospitalization. But during my stay, I decided I would process my anger later. While in the hospital, I kept focusing on gratitude that I lived in a country that had healthcare, and that I was receiving state of the art care. I would have died in many places around the world. I hope you are in a place where you receive the care you need, like I did.
- Forgive and Forget those who Don't Get It: It is what it is. There will be a handful of caregivers that don't understand PTSD. During the middle of the night, I was having a severe episode solo in my private bathroom. I had previously told my current nurse I had PTSD. During the episode, she pulled open the bathroom door (violating my privacy... hello exposure), and THEN, she hollered in from the room, "So what do you have PTSD from? Military? Childhood abuse?" That's the question we all get asked when people don't get it. "OMG, you have PTSD? From what?" Seriously. She asked me that, in that manner. As if we can sum up our life's traumas in a neat little packet that won't possibly trigger us. I laughed. I could handle it. I said, "a variety of trauma exposures, lifelong, including X and Y." But, I thought of all my fellow survivors that could have been seriously triggered by that violation. Here you are, in the bathroom, totally compromised and vulnerable, shouting out your own terrifying and traumatic X, Ys and Zs to validate your diagnosis. As if you'd make it up for special attention. I can only take humor in this incident, because it was so unintentionally insensitive. Yeah, I'm still pissed at that treatment, but I am choosing to focus more on the ridiculous dark humor of it instead.
- Don't Minimize When you Get Home: I'm the queen of denial. I'm home, and I'm depressed, and have to get back to work and family life, and deal with the fact I had yet another life threatening incident. I'm trying to take the time to process it. And rest. And rest and rest.
- I was Quarantined. I was literally in one room, for 7 days: Everyone that came in suited up in bio-hazard gear (thankfully, no masks). Think I got a bit stir crazy? Think I felt like an untouchable freak? Yeah, I did. But then I reverted back to #7, my attitude of gratitude. I paid attention to comforting details, like the beautiful view out my window, the mid-day sun I could sit in, and the sunset each night. I laughed with most of my nurses and shared stories. They became my short-term friends.
- Use your Support Network: If you have one, use it. I had my mom with me most days. My family visited. It helps to have another ear to listen in on doctor reports. I am so fortunate I had that. If you don't have anyone in person, go online! Hopefully you have a smart phone at least to do that... join the support group at Huddl - we'll be there for you. Someone will respond, usually quickly. You have a family of survivors that care for you, even though you won't see our faces or meet us in person. We're there. http://www.huddl.org
Feel free to leave comments for how you survived a hospitalization!