I’ve tried to sit and write this post many times, and each time I’ve written a half-hearted attempt at a paragraph, and then closed my computer, telling myself that I’ll finish it tomorrow. But no matter my comfort level, I need to speak on an issue that is too often left unvoiced and unsaid.
I’ve dealt with post-traumatic stress disorder for two years now, as a result of medical experiences. PTSD. I’ve called it “traumatic symptoms”, and “PTSD-like episodes”- but let’s call it what it is. PTSD. I’ve resented naming it for several reasons, but the biggest one is I had trouble reconciling the events with how I felt-thinking because I hadn’t gone through a war or a natural disaster that I didn’t deserve to call it PTSD. I’ve spent a lot of time telling myself that it wasn’t that bad, that I was just being a wimp who couldn’t deal with trauma. But suffering is subjective, and there’s no use saying that I can’t feel the way I do because someone else has it worse. Someone will always have it worse.
Trauma as a result of medical experiences and medical mistakes is much more common than is discussed. Most of the people I know who deal with chronic and serious illnesses have some form of trauma related to medical experiences, whether it be major or minor. Even caregivers often experience trauma and anxiety. And the anxiety and depression that can accompany PTSD and chronic illness itself is too often unrecognized and therefore untreated.
I was hospitalized on and off for about six months, including one 2 1/2 month stay. During this period, I was being hospitalized for dehydration, inability to get rid of my own waste without intervention, extreme weight loss and pain. We now know that I was dealing with severe gastroparesis and delayed intestinal motility. At the time, I also was in a tremendous amount of head pain, and many neurological symptoms. None of these things seemed to matter. I was told that I had no physical illness, that I simply had an eating disorder, conversion or somatoform. I was told that my parents were too protective, that they were making me sick, and that they were feeding my apparent desire to skip school and get attention by pretending to have an illness. I’ve always thought that funny- if I really wanted to skip school or get attention, I’m positive I would find a way to do it that involved less pain.
Every admission, I was placed in the “behavioral unit”, the care unit for eating disorders and mental illness. Most of the treatments that were tried caused me to decline, rather than improve. I was physically injured multiple times during the admission. I’m not going to go into specifics, but it wasn’t good. I feel the most damaging things were more psychological. Trust was used against me, and things I said would be twisted, and used as reasoning for their actions. Promises would be made and then broken with the same nonchalance, and my safe spaces and coping mechanisms were whittled down to nothing, even as my body declined. The doctors refused to release me until I met certain “goals”, and yet every time I would achieve one, the goals would change. My parents wanted desperately to sign me out against medical advice, but were told that if they did, child protective services would likely be called. I was eventually released (after more than two and a half months) because a holiday doctor came on for thanksgiving weekend, and was unfamiliar enough with my case that he was willing to discharge me. I don’t know what would have happened if I had stayed, but I certainly wouldn’t be where I am now (mentally or physically).
I was understandably dealing with a fair amount of anxiety and depression at this point, but it was a result of the experiences, not the cause. The distinction is incredibly important. For example: pain causes anxiety. Anxiety can cause you to tighten and tense your body, which in turn increases pain. However, the anxiety was not the source of the original pain. I was trapped in a cycle of increasing pain and ever escalating anxiety.
The mental consequences of my experiences were astronomical. I emerged from a 70 day stay a very different person than who I was prior. I was terrified of all new doctors, terrified that they wouldn’t believe that I was sick, that I was in pain, that my body and organs were failing me. Trust was consistently used as a weapon during my stays, especially the longest one, and it’s taken a tremendous work on my part, and the proof that there ARE good doctors, to get myself out of that mentality. It’s something I still struggle with: the fear that medical professionals will be harmful, not helpful.
I don’t know whether those treating me believed in what they were doing and thought that their course was in my best interest, or whether they were simply unwilling to challenge the opinions of others. I wonder if they regret it. These have rolled around in my head for quite a while, the unanswerable questions. I don’t think I’ll ever know the truth.
Recently, my health has deteriorated somewhat. A few weeks ago, physically, I felt like I was in a very similar state to how I felt right before the admission that was so disastrous to my health, physical and mental. It’s odd that a physical feeling can launch your brain back into fear and panic. However, it’s caused me to look back at my recovery over the past two years, and realize just how far I’ve come. I’ve learned to try to trust doctors and other medical professionals again. I’ve learned that when someone asks about my mental health, it’s often not because they want to criticize me for it, but to make sure that the consequences of my physical state aren’t causing additional mental health problems. I’ve learned to try and love myself and to accept that my body and I are on the same side.
Recovery and healing are never a straightforward process. There are bumps and ruts and moments when you feel you’ve slid backwards. But I am moving forward, just in a different way than I expected. There will always be impatience, because healing takes time, but recognize that you are moving forward. You are making progress.
For me, moving forward and making progress has only been possible because of the support network I am so lucky to have. My immediate family, my psychiatrist, my other doctors who have understood, my friends online and in person who’ve had similar experiences. I’ve had to learn to ask for help, and I’ve learned that for help is not weakness. If anything, it shows that you’re strong enough to realize that doing this alone is impossible.
I’ve thought often that because these events effected me so strongly, it must mean that I’m weak, or that I’m not trying hard enough to handle fears or flashbacks or panic. That I’m “doing it wrong”. But those fears aren’t the truth. And for anyone dealing with similar things- you are trying. Your feelings are valid. There is no one way to handle this, no road map where you can say “Aha! Here’s where I went wrong.” (Sometimes, I wish there was.) Honestly, much of my healing and recovery process has been building my road map, and it’s all easier said than done.
There are still moments where I feel like I can’t keep going. When a waiting room has me trying desperately to remember my coping skills, or when a doctor’s choice of words has me suddenly questioning myself and my body. There is no logic in PTSD, and though the logical part of my brain may be saying that I am safe, the parts that control my panic and fear don’t seem to get the memo.
“Sometimes the things we cannot change end up changing us.”
I have changed fundamentally in the years that have passed since I first got sick. In both positive and negative ways. You see lots of mushy quotes about how hardship makes you a better person, or that you can’t know joy without having experienced pain. And for some things, that may be the case. But the truth is that change is not always positive, and there isn’t growth from every experience. Sometimes surviving is the only thing you can do. One foot in front of the other, one minute at a time. And that’s okay. Healing is uneven, bumpy, and difficult, and it’s never the smooth process you expect or wish for.
There’s a Japanese word, kintsukuroi. It means “to repair with gold”. It’s the art of mending broken pottery with gold or silver lacquer, and the pieces become “more beautiful for having been broken”. I like to think of my body and brain like that: beautiful not in spite of flaws, but because of them. That I am more than I was before, not in spite of the challenges, but as a result of them. Heart and brain and body all mended with silver thread and gold, held together by silver linings.