Why Describing Pain Symptoms Is Harder When You Have DID

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Healthcare providers want to talk to you about your pain.  You, and very likely, most of your system, want to have the pain end, but don’t want to talk about it at length.

It feels bad to talk about things that feel bad.

This makes perfect sense to anyone that understands trauma. 

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Here is where your completely understandable trauma responses torpedo your ability to get relief:  not being clear about the details of your pain hobbles a healthcare professional’s ability to help you quickly and effectively.

There is a lot of hope.  This post outlines one path on the road back to helping yourself and all of your parts deal with pain.

You will be the hero of your story.  

You will get better results from treatment.

Your system will trust you more when they see those results.

  1. Pain is usually a scary thing for adults with DID.  A familiar thing, perhaps, but it is still frightening.  Fear triggers flashbacks and dissociation, sometimes full switching, sometimes more blending with parts.  All of the techniques you have learned in therapy to deal with other types of fear are needed…now!  Any DBT, CBT, self-talk, really anything you have ever successfully used to manage fear.  Use it now.  Even if you think that it is one of those “maybe 10% of the time it works” techniques.  Use it now.  Now is the time when any reduction in fear is needed so you can move into the next strategy.
  2. Recognize that your system may be trying to do anything BUT orient to the present time.  Because in the present, you are in pain.  That probably scares the @#%& out of them.  You will have to work hard to be able to stay in the present.  You need to feel fully adult in order to effectively discuss pain with your provider.  Children are not going to be able to parse out things in a way that improves your condition fast enough to get you out of pain.
  3. Accept that if you switch, your pain “story” may have some holes in your pain history or variability in how much pain you feel.  That is not as important as offering valuable details.  Working with your system should help fill in some blanks, but if you haven’t developed solid lines of internal communication, don’t beat yourself up for that.  You can still get results.  Shame isn’t going to help you either, so focus on how to bring some descriptive strengths with you to your appointment.  That is a skill you can develop, regardless of having DID.
  4. Providers need to know some very important pieces of information:  the type of pain (throbbing/pulsing/vibrating/dull, the pattern since it emerged (constant or variable, activities that bring it on or lessen it, what it stops you from doing throughout the day), and of course, the location(s) of pain.  Be as specific as you can be.  Be clear about what you know, and don’t let anyone focus on what you aren’t sure about.  We don’t have time for that.  Combined with being able to be present during a physical exam, you can be instrumental in getting relief from pain by being a partner with your provider.

Want more information about navigating healthcare?

I wrote a book for you!

“Staying In The Room:  Managing Medical And Dental Care When You Have DID” is a guide for empowerment and success!  Written for trauma survivors with dissociative disorders, it directly addresses the complications that ensue when adults with DID, OSDD, and the dissociative type of PTSD engage with our fractured healthcare system.  Even trauma survivors that are providers themselves find getting the care they deserve is a challenge!

What does this book offer trauma survivors?

Learn more about how to manage appointments, surgeries, and self-care at home by grabbing a copy.  Worried that you will be too anxious to open the book?  Bring it to your therapist, and have them support you.  They will learn more about specific adaptations and adjustments that your providers can offer, because they aren’t healthcare providers.  They don’t have the clinical experience to know that your doctor or dentist can alter their treatments in ways that make it less stressful!

Find “Staying In The Room” on  Amazon  as a paperback that you can highlight or outline, or as an affordable read-only digital book.  Their free app makes it readable on any device.

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Published by Cathy Collyer

I am a licensed occupational therapist and a licensed massage therapist, in private practice in the NYC area. I have over 25 years of professional experience in adult and pediatric treatment, with a focus on sensory processing issues and treating the consequences of complex trauma. I am the author of four books, including "Staying In The Room: Managing Medical And Dental Care When You Have DID" and "The Practical Guide To Toilet Training Your Child With Low Muscle Tone". Over the years I have lectured about trauma treatment and pediatric development.

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