Chronic Illness and Post-Traumatic Stress Disorder

Whenever I have to schedule a doctor appointment, I cry. When you have chronic illness, you rarely call to schedule a check-up. Most of the time, something is wrong. And most of the time, you’re at the doctor so often that any check up duties happen right on schedule because you’re there anyway.

I used to think that I was afraid of some new diagnosis, or that I’d need another unexpected surgery. I used to think maybe it had something to do with my fear of needles. But in my own mind, those were pretty weak excuses. They were very real issues, but they didn’t instill fear in me to think about. Not like phoning the doctor did.

Whenever I call, it’s because something has gotten worse, or I have a new symptom. After the call, I tend to get worse and worse leading up to the appointment. Again, I pinned all this on some kind of phobia I must have and just don’t realize. It wasn’t until the other day when @KentSmalley tweeted about chronic pain and Post-Traumatic Stress Disorder that my wild reaction began to make sense to me.

I’ve heard a lot about PTSD but never considered I might have it. People who see war or suffer abuse get PTSD, and my happy little existence didn’t seem to be in the same ranks. The only horrible thing that ever happened to me was getting sick. Illness, pain, hospitals, and surgery are daily parts of my life. They seem so….common. Not traumatic, every day things can’t be traumatic. Can they?

But PTSD from chronic pain is very real, and actually makes a lot of sense. Why does calling a doctor put me in the throes of depression? Why have all of my break down into uncontrollable crying episodes happened in hospitals? Perhaps my brain is perceiving doctors and hospitals as threats. If I was a wild animal human, these are the kind of instincts that would tell me to run from a volcano or fight off a bear. Hospitals are not volcanoes, though, and doctors are not bears. The result? My “fight or flight” reactions in my brain are causing stress. I don’t run from hospitals or fight doctors (usually ๐Ÿ˜‰ ) so my brain keeps releasing the chemicals that say RUN! or FIGHT! and eventually the imbalance causes a breakdown.

And that’s just the emotional side. Endometriosis, like so many chronic pain conditions, is very volatile in reaction to stress. Stress that causes muscles to tense up and irritate lesions,ย  but also stress that releases hormones that, guess what? Make endo grow.

And of course, there’s IBS. As my gastrointestinal specialist said, IBS is short for “one of many intestinal tract disorders we haven’t yet discovered, named, or learned how to treat.” IBS is a huge blanket diagnosis that covers a lot of things. My unique brand of IBS is related to an anxiety disorder – now, this was diagnosed by a gastrointestinal specialist, not a psychologist, so we don’t know fancy terms for it, but it’s stress that makes me nauseated, barfy, and sick to my stomach. And not normal stress, undue stress. Stress I can’t control. I know what sets me off but that only helps so much. It’s more than just doctor visits, it’s every day life. The only “cure” would be a completely stress-free life, which could cure just about anything I bet! So I started antidepressants, which really helped with the undue stress – stress caused by social interactions, perfectionism, and other every day triggers.

But they really didn’t help much with things like going to the hospital. There seems to be another class of triggers that I still can’t react rationally to. I can go to the doctor and seem fine on a really good day. Maybe I won’t break down crying until I’m in the car. But a lot of times there’s tears in the office, or some poor nurse who gets a claw-swipe from me while we take blood. If I’m brutally honest, I feel crazy.

I felt less crazy the more I learned about PTSD. All my actions fit the description. I’m hoping that just the knowledge that there’s a real reason for my reactions will give me the balance I need mentally to try and control the fight/flight impulses.

I’m a huge fan of Sunlight in Winter, which is a blog you need to read, whoever you are. I think it should be required reading for humanity. She has a great series on pain management. In her case, the pain is caused by fibromyalgia, but it’s a technique that can be applied to any chronic pain condition. Now, every time I personally have tried to relay her blog’s teachings, I’ve been met with anger. And I know that’s because I’m not explaining it properly. But she has multiple blog posts and I just don’t have the same mileage in a conversation. So I’m going to try and sum it up here, but please read her blog because she explains it all a zillion times better.

So when I try to explain this, the reaction I get is “Well my pain is REAL so that won’t work.” Pain is a touchy subject and a difficult one to fully understand. Basically, pain happens in your brain. Pain is a signal. But once you say pain is “in your head” it sounds offensive and I get that. But just take a second to really think about it. If you slice a finger open, your finger hurts. You are focused on your finger because a signal in your brain is going “FINGER!!! FINGER DAMAGE!!! LOOK AT THE FINGER, LOOK AT IT!!!” The actual pain is happening in your brain. Same for chronic pain, when my abdomen hurts, I can look but there’s nothing to see. It hurts inside, except that it doesn’t – it hurts in my brain. Obviously, you can’t just decide to stop thinking about it to make the pain go away – although we all know you hurt less if you can “take your mind off it.” Physical and mental are so intertwined but so separate in medical science that any suggestion to try and meditate, relax, or otherwise think your pain away is scoffed at. We’ve all been trained to take pills to get rid of illness, but lots of illness, like endo, fibro, and IBS, ain’t going anywhere. You can take pills and have surgery for your entire life and that will not fix it.

Now pay attention because this part is important: I AM NOT SAYING TO STOP TAKING MEDICATION OR REFUSE SURGERY. Sure, there are instances where maybe you should opt out of a treatment but MAKE SURE IT WON’T KILL YOU FIRST. What I’m suggesting is something to try in tandem with everything the trained professionals say to do. Let me re-iterate, PLEASE DON’T KILL YOURSELF. Okay.

So when you’re in a flare of chronic pain, take a moment and think “am I in danger? Is what I am doing dangerous?” Take my doctor phone call, for instance. If I’m calling the doctor, it’s because my pain is getting bad, so I’m likely in pain. It’s not the phone call that causes pain. But it makes me nervous and causes physical signs of stress, which can exacerbate pain. So I’m about to dial and also feeling faint. I take a moment and think the words “am I in danger?” No. Calling some one is not dangerous. But it scares me. “Ah, wait!” says myself to myself, “It scares you, but is it dangerous?” No, but I don’t like it. “But is it dangerous?” No. This admittedly silly conversation works. Am I still hurting? Yeah. Do I still need to make the call? Yes. But my palms stop sweating, my muscles relax, my breathing slows, and all of that can do nothing but help my endo.

This strategy is really great even if you’re not in chronic pain. Going into a job interview can trigger a fight or flight response, and this technique can help you stay cool. For me? I suspect I’m dealing with PTSD, though I don’t know how I’d even go about getting it truly diagnosed or if that would be worth my time. But I have, at least, a professional diagnosis of severe anxiety. Chronic fight or flight response. Chronic job interview nerves. This technique is helping me, but I have a ways to go. I’m trying to ween myself off of antidepressants but I don’t know that I’m really ready to stop. I want to give it another week or so before I give up.

What do you guys think? Should I see a professional about my suspected PTSD? Do you experience symptoms of PTSD in relation to your chronic illness? Have you ever been on/weened off of antidepressants? Talk to me! This is all news in my book and I’m excited to learn!

I’ll end this post with some amazing drawings a friend found for me that explain everything. (P.S. why is it that whenever I sit down to write “a short post real quick” they’re always the longest ones?)


12 thoughts on “Chronic Illness and Post-Traumatic Stress Disorder

  1. Rachel, great post! This makes perfect since to me. As someone with depression, an invisible mental illness. I understand the fight or flight response associated with PTSD. When I was not medicated simple things would set me off. I would be rude to people I didn’t even know because I was afraid and my fear turned into angry, aggressive behavior. I blamed those closest to me for my sad feelings. I would lock myself in my bathroom and just sit on the floor and cry. Thankfully I don’t do those things any more. I have tried getting off the medication in the past without success. Now I think “If I was taking medication for a heart problem would I stop taking it?” I have a chemical imbalance that can’t be cured, but it can be managed by medication that slows my thinking down so I can process what is really happening. I can think “I’m unhappy, sad, afraid but is the situation really hopeless?” Thank you for the insight!

    1. Thanks for your thoughtful response! My main reason for wanting to eventually be able to stop not only this but any medication possible is wanting to lessen the chemical load on my body, particularly my liver and bones. Pain medication is what is most hard on those two, so I’m alright with staying on antidepressants while I focus on lessening the pain med intake, but I am worried about the effects any medication may have on any of your grandchildren during their short stay inside my tummy, whenever that time comes. ๐Ÿ˜‰

  2. I had PTSD before I got sick, so my perspective is a little different. But being able to talk to my therapist about the issues living with a chronic illness brings up has been really helpful to me.

    I like your repetition of “Yeah, but is it dangerous?” That’s something I should start doing.

    1. Thanks for the comment! Yes, keeping one’s perception of danger realistic is very important and helps me a lot. I hope it helps you, too!

      Lately I’ve been thinking over therapy and I’m starting to see all the merits of such an endeavor. I’d especially love to find someone who specializes in chronic illness, because even though I have close friends I can turn to, sometimes you just need someone who “gets it.” ๐Ÿ™‚

  3. I have been thinking about this a lot lately! Getting sick was a trauma and continues to be for me. I feel I am definitely suffering from a level of PTSD due to illness and interactions with certain medical providers. Thanks for shedding light on this!

  4. I definitely have PTSD from all the pills, surgeries, rude doctors, MRIs, blood draws, lack of sympathy from family, etc. I haven’t looked at that blog link you posted yet, but my physical therapist gave me a book called “Explain Pain” by Lorimer Moseley, which seems like it might be similar (it is also about the origins of pain in the brain, and how the brain can increase pain when it perceives a threat). I plan to review the book, but I am about 30 blog posts behind where I thought I would be…oops.

    1. Haha I know that feeling. When I started, I kept a 1 page written list of blog posts I needed to write in order and all, and now I think it’s about 20 pages long! I’ll let you in on a little secret ~ many times when I post about a doctor visit or phone call or any event, it probably took place a loooooong time ago and it’s just now getting posted. ๐Ÿ˜‰ Only exception is the “travel bug” posts, I try to crank those out as they happen so they have current info. But my personal health journey is always a few posts behind.

      In any case, I’m VERY excited to see your review! It sounds like a really interesting read.

  5. I got off narcotics after 6 years of oxycontin and oxycodone. I needed to have less confusion and other side effects. I manage with OTC pain pills and meditation with God. I may have gotten to a point of reflex pill taking. Just putting my mind in a different place helped but is not a cure. With stretching and exercise I have a package deal that works for now.
    I wait to see where my disease progress will do next.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s