PTSD Et Al. (Mini-Essay #3)
Ten things about lupus life and trauma recovery
This is part of a series about living with lupus and trauma recovery. I hope those of you with chronic illness or struggling with your mental health might feel less alone as you read these. This is also written for those who want to care, but need an insider’s perspective to help you develop compassion and empathy.
3. Navigating life with the weight of mental health stuff.
I wonder why people don’t ask me about my mental health. Do they assume everything is fine? Maybe they forgot. Out of sight; out of mind. Or are they just unfamiliar with what these terms mean? I might mention PTSD or depression here or there. But rarely does anyone ask about it more. Maybe they think it is disrespectful or too private, to ask.
In case you’re wondering, it isn’t.
I don’t want to hide these. Hiding them stigmatizes them. I can’t be my authentic self when these challenges to my mental well being are always there, around every bend. These have been some of the heaviest weights to carry and the loneliest the last year and a half.
I’ve found that attempting to describe the way my mind is affecting me seems nearly impossible. They either minimize the struggle or they make me seem crazy (granted, sometimes I am).
Depression
You know those lead aprons they put on you when getting an X-ray to protect your reproductive system? (These days, I’m like “Please X-ray my reproductive system and damage it more just for good measure!”) Wearing one of those all the time, heaviest on your chest, is what depression is like.
On paper, postpartum depression and anxiety are only named this for a year, so that is concluded by its own definition. However, many practitioners speculate these hormone changes affecting the brain might last longer for some women. Either way, it seems PTSD and grief are at the root of my current up’s and down’s with depression. That is a good thing.
On the weeks depression is thickest, I just want to sleep and escape the world. But I have a toddler dragging me out of bed. I coax myself to find the sun or at least go for a walk. To reach out when I want everything to just fade away. I force myself to engage in something bigger than myself…
Surely depression is inevitable and common for everyone with a chronic illness. By their very nature, they keep us isolated and unable to get out in the sun and move our bodies.
PTSD gets better but it’s symptoms are not fun.
I am a great case-study for why people need to be treated for PTSD as soon as possible, as my PTSD symptoms are gradually reducing! They aren’t nearly as pervasive—I’m at the low-end of the diagnosis scale now.
However, it isn’t uncommon for something to trigger a memory and I will relive some moment—the fourth failed IV attempt, the patient with psychosis clamoring at the ER, the nurse shouting to stop the bleeding, my hands shaking as I tried to write, that line from the song playing as I lay immobile in a bed.
I’ve become very familiar with the symptoms of PTSD over the last five years. These are partially by living life with our former housemate who also has complex PTSD, lots of study and research, and practicing trauma-informed care regarding social issues. But it is still strange to identify these symptoms in myself.
Here is a rundown of some of the symptoms I experience:
Flashbacks
Flashbacks are memories that come over you where you feel like you are reliving an (often traumatic) experience. It might feel like you’re in a dream or you might feel it in your body. They usually aren’t pleasant and are usually triggered by something. For example, when I inserted the above picture of me with a mask in this post, I had a minor flashback. I remembered where I was and what was happening when it was taken.
At the time this picture was taken, I was getting a uterine biopsy. It probably would have been fine except the circumstances around it. I had been to the hospital twice for hemorrhaging, I had some negative experiences with the doctors there and I was extremely weakened by anemia (in addition to a lupus flare and it felt like every other disaster going on postpartum).
As if that wasn’t enough (it was), I had also taken a cervix softener right before this picture was taken and had also done so the night before. I was scared that I might hemorrhage again, as I started cramping and bleeding. I looked up the medication and realized the cervix softener was the same thing a the Abortion Pill. That brought up all the complex feelings.
I just survived an extremely complicated pregnancy where I went against the doctors’ recommendation to terminate. I was actively living with the consequences of that decision (both good—baby Kai! and bad—my body deteriorating). Meanwhile everyone was arguing about Roe vs. Wade as if it was an obtuse issue, not my recent reality.
My body held all the tension of this, remembering the feeling of being poked, prodded, and pulled open. My body didn’t forget feeling violated, for even though my lips gave medical workers permission to do what they needed, my body didn’t give permission. Our bodies don’t always align with the choices our minds make.
Let’s just say that it all sucked. I was going through it hard in that doctor’s office that day when this picture was being snapped.
This is flashback—all those memories + the memories of how my body felt. Imagine having this happen to you all day long. That’s what it used to be like for me, last year around this time. Sometimes flashbacks come in dreams instead. These days, though, flashbacks happen much less or I can sift through them much quicker. Even so, they are frequent enough to make me anxious often, wondering what will trigger one, or avoid experiences that might set them off.
Dissociation
Dissociation is one of your brain’s ways of coping with the experience, making you just kinda be floating and not really present. You might be reliving a flashback. Or you might be in some fantasy, or thinking about nothing—you’re just a floating object in space. We all dissociate to a degree (it is what daydreaming is). But usually we use the term to talk about a more extreme version that can be time-consuming or downright dangerous.
For example, dissociation isn’t great when you don’t know that you are driving/walking somewhere, or when you forget where you are. Or if you forget you’re responsible for you children, or you don’t know you are supposed to be at work. Dissociating can be extremely unsafe depending on your environment.
Initially you can’t control dissociation, although you can adapt skills to help you stay grounded. As I already had been practicing a lot of these skills to help my roommate, I knew how to ground myself. But it can take a hot minute to realize you are even dissociating.
It usually happened at night for me, when it isn’t dangerous, such as I’m already tucked into bed and am not responsible for anyone. I am so grateful for this, and that this too is going away. But because of my experience helping people who dissociate, I found it very disconcerting to be experiencing it myself. Presence is gone and time becomes nothingness.
Panic attacks
I’ve only had two of these, the first was a few months back and I was convinced I was having a heart-attack as my tight chest hurt so much. The second one was just last week. I had Meg (my former housemate) sort through a cardboard box that had been precariously balanced on a side table in our kitchen for a whole year. I wouldn’t touch it. It was filled with folder after folder of discharge papers and random old medical bills and other papers.
I barely had to glance at any of the sheets before they were sent into the recycle-bin, but it was enough to push some buttons inside me. My body started shaking, my eyes started crying, my chest felt caved in, and everything was tight and clenched. I couldn’t breathe and began to hyperventilate. Meg had to sit me down, slowly walking me through counting and breathing until I could regulate, get enough oxygen, and come back to myself.
I didn’t really delve into anxiety here as I talk about my mental health, as that isn’t really new to me. But depression and PTSD have been no joke. When the weight of depression makes me feel as though I’m always treading water, a panic attack can hijack my evening, or twenty minutes can just disappear into a flashback that I have no way to avoid—yes, let this be a reminder that our mental health does matter. Check in with your friends and family who struggle with these. It is hard when glances at the clock between bad dreams and flashbacks are how we make it through the night.
(I guess this isn’t so mini after all. But some of the following definitely are!)
Read the rest of this series:
Please Don't Simplify the Complexities (Mini-Essay #1)
Pharmacy (Mini-Essay #2)
PTSD Et Al. (Mini-Essay #3)
Not-So-Friendly Insomnia (Mini-Essay #4)
Phantom Pain (Mini-Essay #5)
Hello, Hair! (Mini-Essay #6)
Homebody (Mini-Essay #7)
The Scars (Mini-Essay #8)
Betrayal (Mini-Essay #9)
Grief for a Lost Year (Mini-Essay #10)
Here are other lupus/trauma related posts from the last year-and-a-half:
House of Life, Washing Hands, Do Your Job Well, and the Lupus, Pregnancy, and Autoimmune Illness series posted at AverageAdvocate.com.On Average Advocate this week: How Do You Honor a Story?
Follow me on Instagram @AuthenticallyElisa