Tag Archives: recovery

PTSD and me.

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.

June 2014, during a short hospital stay. I had my first feeding tube placed in order to do a procedure. I couldn’t tolerate water at this point without vomiting.

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).

July 2016: Pain was never controlled. At one point, after screaming in pain for hours, a doctor asked the nurse whether she could push saline and tell me it was pain medication. Fortunately 

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.

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October 2014: At this point one of the few bright spots was the therapy dogs.

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.

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October 2014: I was made to eat for the first time in months, despite the fact that I wasn’t tolerating water and was vomiting constantly. This “food trial” was done on Halloween, right before a planned trick or treating event, one I had spoken to the psychologist about being excited for. She insisted we try before the event. It did not go well.

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.

August 2016: This hospitalization has triggered a lot of memories. Previously to this, I hadn’t been hospitalized in my home town since being discharged in November of 2014.

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.

August 2016: Physically, I feel very similar to how I felt prior to being admitted 2 years ago. However, now I have doctors who have treated me with compassion and respect since the beginning.

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.

November 29, 2014. Discharged, after 70 days inpatient

So, is this going to be long term? 

Recently, I was asked the question, “Do you think this will be a long term thing?” This was referring to some recent concerning symptoms and I had made the request for a piece of equipment- a wheelchair that fits me and is lighter and more easily maneuverable. Now, anyone who’s ever looked at those things knows that they are not cheap, and so often the process for insurance approval is long. Now, my all seeing eye to the future was on holiday, so my answer to the doctor was “I don’t know.”

When I first got sick, I thought it would be a few weeks until it got better. Maybe a month. I never looked at my illness as “chronic” until I’d been dealing with it for the better part of six months. And even then, I wanted to avoid doing certain things because I was just going to get better. As of now, I’m still waiting. (Any day now, right?)

As my illness has gotten longer, and as it continues without a visible end, my perspective on many things have changed, as you would expect. One of those things is acceptance. I’ve been trying hard to love my body, without faulting it for it’s limitations. Of course, this is easier said than done. But one of the hardest things for me that prevented me from accepting my body that niggling fear that acceptance means giving up or giving in. That if I say, yes, this is the reality right now, that it means leaving behind the idea that I’ll ever get better.

My 18th birthday.
In my mind, at least recently, the idea of acceptance has changed. It doesn’t mean giving up the idea of ever getting better, or even the idea It means trying to move forward from the idea that me and my body are on opposing sides of a war that many days has no clear victor. It means focusing on the fact that my body has fought so hard to live and to thrive, and that I’m proud of it for doing so. I’m sure as hell going to continue to fight to be healthy. But I also will fight to live the best possible life I can in the body that has carried me this far, the body that despite all the craziness that has been thrown at it, is still going. And living the best life possible? That sounds like the furthest thing from giving up.

My service dog, Taxi, and I.

A letter to my disease

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Dear illness,

I never knew that you would come for me. We all know about illness, it is the elephant in the room. Yet somehow, we always assume it will happen to “someone else”. The trouble is, we are all “someone else” to the rest of the world. When I joined the ranks of those forced to shoulder you, I realized I couldn’t depend on this life happening to others.

You came at an unfortunate time. I was at the cusp of life, supposed to be healthy and free. No one who has not tasted this world for themselves imagines that someone who is this young should be sick. You aren’t fair. You aren’t right. But you are what happened.

And my life today is very different than that of my peers- but that’s okay. Because I have learned to savor the moments where I can breathe without pain. To walk when I can, and when I can’t, that’s okay too. You have taught me that sometimes crying is the only way to heal.

You took so much that I would give a lot to get back. You took my love of sports, my ability to eat, some days even my ability to move. You’ve taken so much more. And I hate you for that. But because of this, I am grateful for the little things. In a few years, those are the things I want to remember. How despite you, I found hope, and happiness, and joy. I have learned to find the silver linings, even when it never seemed to stop raining.

You’ve showed me how fast life changes, but you’ve also shown me how to live. That sometimes, you should take the hurt later if it means you get to walk on the beach. That when you are living seconds at a time because of how much it hurts, remember that you will make it out the other side. That live isn’t measured in years, and months, or even days, it’s measured in heartbeats, and kisses, and prayers.

So illness? Thank you. Because of you, I know what it is to be brave.

 

Sincerely,

The girl who’s kicking your ass.

This was also published on The Mighty.