Lately, I have noticed that a lot of people in the Chronic Illness community are using a term that confused me a little. The term is Medical PTSD. When I first saw this term on a Facebook group, I thought it was just a new way to add a mental aspect to chronic illness. It sometimes seems like everyone is looking for a way to label themselves in a way that can be destructive. But then, a hospital stay in December 2019 happened. I began to completely understand what the term meant and why it is important to acknowledge its existence.
Procedure Goes Wrong
I was hospitalized for Status Migrainous as well as Idiopathic Intracranial Hypertension. Although this hospital is one of the best in the country, the inpatient Neurology team seemed completely clueless about treating either condition. Honestly, I felt like they just wanted rid of me because they didn’t know what to do with me. But, my Neurologist, who is associated with the same hospital but is part of the clinical team, told them I needed a Lumbar Puncture (LP) to release the high CSF pressure around my brain.
This wasn’t my first Lumbar Puncture and I understood that it meant a needle would be inserted into my spine and CSF Fluid could be drained. This time it would be done bedside instead of Fluoroscopically guided and this is where everything went wrong.
This bedside Lumbar Puncture ended with a needle being entered into my spine 4 times. The Resident became rude, condescending and even had the nerve to blame my weight on his failure to do the procedure. Then he told me he was trying again and I refused. He was really belligerent toward me as I continued to say no.
By this time I was crying for 2 reasons; one, because I was being bullied and two, because he had hurt me during his final attempt. My husband, who was allowed to stay in my room due to my insistence, was livid and backed me up 100%. I finally did get my Lumbar Puncture that was Fluoroscopically Guided after an amazing nurse stepped in and fought for me.
It all hits me at once!
In case you missed it, yes, I had a needle inserted into my spine 5 times that day. And because of that, a few days after getting home, I had a Spinal Leak and needed a blood patch. This is when your blood (drawn from an artery), is injected near the area of the spinal leak. Yes, yet another needle inserted into my spine.
This blood will clot and form a seal over the leak. The problem is that it is done at the bedside and I was completely freaked out. I asked for something for my nerves but they needed me to sit a certain way so I couldn’t be groggy. This is when I realized that Medical PTSD is very real. Fortunately, the Anesthesiologist that performed the procedure was amazing. Inalso need to thank my hubby for calming me down!
Are there other types of Medical PTSD?
The answer is yes, there is. When a person has a chronic illness it can trigger PTSD. The trauma of having a life-altering medical condition can lead to anxiety issues that are directly linked to the illness. In the case of this type of Medical PTSD, instead of one traumatic outside event, it is one, ongoing internal event that is the trigger.
For example, if you start a new treatment for your illness and symptoms are subsiding allowing improvement in life, do you live in fear of the return of symptoms? If the answer is yes, you may have Medical PTSD. This is actually something I am struggling with right now.
Yesterday a rough day. My CSF pressure is high and I spent my entire day in bed. At times, the simple act of lifting my head off the pillow was too much to accomplish. This is how I was for almost 4 years but the past couple months have come with improvements. Yesterday was the first time in a long time that I had no choice but lay in bed. It feels like I have taken 1,000 steps backwards. Even the act of writing this post is being done in 5 minute intervals because the pain is excruciating.
What Helps Medical PTSD?
I am no medical expert and I can only share my life experiences in hopes of helping others. First off, if you are having severe anxiety, seek help. Honestly, I take an anxiety medication every morning and there is absolutely no shame in that. Secondly, keep reminding yourself that one bad day doesn’t mean that tomorrow will be the same. Thirdly, stop blaming yourself for things that are out of your control. (This one is my hardest one) And fourth, be kind to yourself.
Although doing these things will not take away the Medical Trauma you have experienced, they will make coping with them easier. Also remember, that doing these things takes practice and the more you do them, the more natural it will be.
So, is Medical PTSD just another attempt to label things unnecessarily? In my opinion, absolutely not! Is Medical PTSD real? Absolutely, yes!
Disclaimer: This blog post provides general information and first hand accounts about a serious medical condition. The words and other content provided in this blog, and in any linked materials, are not intended and should not be construed as medical advice.