Recovery Challenge: Multiple Diagnoses aka Comorbidity

In honor of the egg donor’s birthday, and extra post this week.

What is Comorbidity?

I don’t usually trust Wikipedia as a primary source, but this definition fits my thoughts on multiple diagnoses.

“In medicinecomorbidity is the presence of one or more additional disorders (or diseases) co-occurring with a primary disease or disorder; or the effect of such additional disorders or diseases. The additional disorder may also be a behavioral or mental disorder.

In medicine, the term “comorbid” can be either medical condition(s) existing simultaneously but independently with another condition; or it can indicate a related medical condition or conditions. In psychiatric diagnoses it has been argued in part that this “‘use of imprecise language may lead to correspondingly imprecise thinking’, [and] this usage of the term ‘comorbidity’ should probably be avoided.”” – from Wikipedia

11+ Diagnoses Become 1 Primary with a Secondary diagnosis

Between 2004 and 2007, I was diagnosed with 11+ different mental illnesses including:
  • clinical depression
  • 5 different anxiety disorders
  • mild agoraphobia
  • anorexia nervosa
  • a variety of other phobias
  • panic attacks
  • obsessive/compulsive disorder
  • and an anger management issue.

I wish I could remember all of the names, but I can’t. What frustrated me the most at this time was that they kept giving me these labels because I did not fit any of the mental illness categories exactly.

Symptoms like hallucinations and dissociation were evidence of a psychotic disorder; but they couldn’t call me something I wasn’t.  And I wasn’t psychotic.  The psychologists and psychiatrists kept treating each condition as something separate.  I began to believe I really was crazy.

Between 2004 and 2014, I had visited 3 therapists (1 psychologist and 2 LISCWs), 2 partial programs with teams of mental health providers and 3 psychiatrists, and 11 private psychiatric professionals (psychiatrist and psychiatric nurse).  The therapists kept recommending medication to make the symptoms go away.  The psychiatrists kept giving me medication – increasing doses or changing medications – until they got frustrated and gave up on me because nothing worked.  I take the medication and get sick.  The symptoms go away, and I become a catatonic zombie.  I stop taking the medication and become independent again.  The symptoms come back worse than before.

Ironically, it was an academic advisor in graduate school who figured out my correct diagnosis: complex post traumatic stress disorder.  The academic advisor was a domestic violence survivor and in the process of getting out of the relationship when we met.  She recommended the book Trauma and Recovery by Judith Herman to read.  That was the first turning point in my recovery.  I realized that everything I had remembered was the driving factor in my diagnoses.

Then I learned that each diagnosis can be its own disorder or symptoms of a more complex mental illness like post traumatic stress disorder and personality disorders.

Lessons Learned from Multiple Diagnoses

Along with medicine, the therapists helped me by teaching me strategies to rebuild my internal sense of self – the foundations based on my values, beliefs, and self-trust.  My problem was and continues to be that I do not trust anyone until they have proven themselves to me with their actions.  This can take a while or not happen at all.  The trust issue and pressure to stop going from the sperm donor caused the first therapy relationship to break up.

I still go into every potential relationship knowing that, unless I feel both emotionally and physically safe, it’s going to be temporary.  I met my closest friend during my junior/senior year in college.  We reconnected a few years later through a mutual friend and have remained friends since then.  Up until 3 years ago, I waited for the moment when something one of us said or did would break up our friendship.  Even now, when I or one of my parts are having a particularly difficult time, we wonder when all of the people in our support network are going to stop being supportive – either they walk away or I walk away.

The voluntary programs taught me that everyone, even mental health providers, has an agenda.  Maybe not a conscious one, but definitely an agenda / purpose driving their approach to helping others.  The first time, a program helped for two reasons:

  • 1)I learned that I wasn’t alone
  • 2) there were people in the world who could accept an eccentric, weird, individual with “unique perspective of yourself and the world” (paraphrasing my program clinician)

The second program taught me that I wouldn’t get anything out of groups unless:

  • 1) I trusted the clinicians to do their jobs
  • 2) the people around me to be supportive, respectful, willing to speak up and help other clients in the group, and accepting of others.

And even though I didn’t get the same kind of assistance as the first time (different people working in the program), I learned to trust my instincts.  By observing the people in the program, I learned about my values and what I want in any kind of relationship.  The people in the program (clients and clinicians) reminded me of people in my family and circle of friends.  The same family and friends whom I was considering a permanent separation from.  Not knowing I had Dissociative Identity Disorder made things even more difficult.  I didn’t remember interactions with other clients or understand why they treated me different from moment to moment.

The other part was my “unique perspective” because I was in a different recovery place than the others.  I couldn’t relate to anyone.  And the more I talked, the more I felt separated from them.  The other clients started to resent me and avoid me – partly my fault because I was obviously cautious and had mood swings from dissociation/switching; partly theirs for feeling frustrated/angry/upset with me because they couldn’t be where I was – which caused tension whenever I was in a group or tried to connect with others.  The clinicians were not happy with me because I was too assertive and knew more about the coping techniques they tried to teach us than they did.  This was routinely said by clients in groups where the clinicians and moderators could hear.

That’s when the subtle condescension and shaming started.  And not just with me, but with other clients too.  The whole atmosphere made me uncomfortable.  And it was only after I learned about shame that I realized why I felt uncomfortable and not inclined to trust anyone in the program.  But the month off from work gave me time and perspective; two things I needed to make the final decision to walk away from my family and current relationships.

Conclusion

Anniversaries bring up a lot of stuff.  Remembering the past is not a waste of time if one learns from those experiences.  Today is my mother’s birthday.  Sometimes she is referred to as the egg donor.  Most of us prefer not to attribute the word “mother” to her, but old habits are hard to break.  I and my parts always get stuck in memories and feelings before, during, and after her birthday.

I think about her and get angry.  I think about her and promise myself not to spend time around people who act in similar ways towards themselves and others.  I think about her and feel proud that I am able to choose who to spend my time with even if that means having a very limited social circle.   I think about her and wonder if she can still hide her craziness without me there to take the blame.

Most important, I think about her and feel relief that we are not in each other’s lives.

When I think of now, I wish that all survivors and their connections are able to find supportive, compassionate, knowledgable mental health providers who can offer them the correct diagnosis and options for symptom management instead of having to go through what I did.

Coping Strategy: Happy Lists and Affirmations as Reminders

A lightly edited post; still with errors

This weekend, all I wanted to do was stay home and safe.  Going out reminded me of leaving my apartment to visit family for reunions and events.  Instead, I stayed home and took care of to-do items I’ve been ignoring in between sleep and meditation.

Friday night, I was so wound up after getting exciting news that I couldn’t bring myself down from the adrenaline high.  My system does not have an “off switch” for adrenaline anymore, so I have to find ways to manually dial it down.  My alters are the same way.  So we called the hotline (link here) and spoke to someone who helped us redirect the overwhelming feelings and learn to cope with the happy feelings so that adrenaline is not triggered.

Happy List Coping Strategy

The hotline counselor suggested a happy list.  I don’t know about you readers, but I can count on one hand the number of times I have felt genuinely happy.  And each time scared the s***t out of me.  The list is to remind me of why I am happy and do not have to be scared.  Then the next time I feel this way, I can go back to the list and remember that feeling happy does not have to be scary or triggering.

Today’s Affirmation

Today’s affirmation comes from Louise Hay.  My life is full of change and transition right now.  Many positive experiences in the present and the future are taking place as I work through recovery.  My therapist would say parallel tracks.  I sometimes call it living two lives at the same time.  Both work.

Today, in this moment, I am exactly where I am supposed to be in order to move forward with my goals and dreams.  Louise Hay’s affirmation is a reminder of that.  The written words and colorful background help all of us remember not to regret our past and to feel gratitude for the positives in life now.  Reading the words helps us feel grounded and reminds us of all the ways we can feel physically and emotionally safe.

Hope this helps you too!

Unedited Post: Coping Challenges of the Sleep Deprived

Warning this post may contain more spelling and grammatical errors than usual

I am sleep deprived.  Been a tough week full of unexpected joys and stresses.  Spent one sleepless night and many restless ones this week.  On top of that, nearing the end of an energy cycle, so already feeling sleep deprived.

Sleep Deprived

Recovery work takes a lot of energy whether you are low-functioning, functioning, or high-functioning (like me).  For people who consider themselves normal, any kind of excess stress over a long period of time can feel this way.  For survivors, the “excess stress” and work to manage and cope while living and working is their version of normal.  Not surprising that many feel tired all the time and will sometimes crash into a period of sleep or rest for no apparent (to outsiders) reason.

Live Independently or Dependent on Someone Else

I, we, chose to live independently,  That means:

  • not taking medication
  • not self-medicating with drugs, alcohol, food, cigarettes, (something I missed here)
  • Not letting my family or friends take care of me when I have a panic attack or get so tired I can’t move

No offense intended to those who can and want to let others care for them when this happens.  I learned a long time ago that taking care of myself was much safer and healthier than letting others take care of me.

We don’t have to worry about:

  • shaming and blaming tactics for “getting sick” and being weak
  • punishment for not accomplishing daily tasks
  • guilt for taking up someone else’s valuable time and space; being a burden
  • negative criticism about being weak and stupid and lazy like our mother
  • pity and condescension from outsiders for always being “sick” and “irresponsible”
  • vulnerable and unable to protect ourselves from the monsters

Precautions

  • At times like this, my parts and I have a plan.  It goes something like this:
  • Inform supervisor and relevant co-workers that I am tired and not feeling like myself lately
  • Increase the self-care – eat more, take more breaks, keep multiple coping strategies and techniques on hand, make sure the house is relatively clean and stocked with food, use sleep hygiene routine, call hotline for help
  • Keep items and thoughts that help me feel safe close by
  • Prepare to take a sick day
  • Make sure I remember to email supervisor if I take a sick day
  • Stay close to home; wear comfortable shoes and keep my phone handy if I go out

When I Crash

Usually that means I sleep for 12-20 hours with breaks for food or hygiene.  Or I am awake, but unable to leave the house because of muscle cramps, stiffness, and pain.  So I move slowly and rest a lot at home.  I rest when I can, sleep when I can, and move when I have to.  I keep busy with books and movies, knitting, cooking, or sometimes doing nothing at all.  Eventually, my body feels better, the tension leaves, my muscles relax.  I am not so tired anymore.  And I go back to my “normal” life.

So here you have it – my plans for the weekend.  Hope yours is much more interesting.

Alter Post: recovery philosophy

Necessary But Not Sufficient

All of us:

Coping strategies and techniques are resources.  The more you learn, the more help you can access.  Therapy, programs, medicine, etc. are resources. Asking for help widens your support system; another way to find potential resources.

Angora:

Meeting basic needs is a resource.  Taking care of physical, emotional, and spiritual health is a resource.  Practicing basic hygiene is a resource.  Discovering and implementing ways to feel safe are resources.

Sunni:

Human characteristics like resilience, courage, intelligence, creativity, persistence, flexibility, acceptance, tolerance, and respect are resources.

All of us:

One is not enough.  How many is enough?  Is there such a thing as too much?

Dawn-to-Dusk & Breezy:

My therapist says that one resource is not a cure-all.  It takes practice and use of many resources to create a solution.  Many times when we reach a wall in therapy, it is because a new aspect of my trauma history has been revealed.  We brainstorm together and separately.  She asks her resources, and I research information.

Sienna:

And when I get frustrated, she reminds me that one resource or many resources, it does not matter.  The more knowledge you have, the better your chances of finding a solution.  What I know, everything I have learned so far is necessary but not sufficient.

Blue, Purple, & Silence:

I like to draw and play in the quiet room.  I like to run and help the adults with protection.  I like to use the catapults and the bubbles.

All of us:

No one individual or resource has all of the answers.  Change is inevitable so we have to adapt to them in order to move on.  Sometimes that is easy.  Most of the time, it sucks.  We tried going it alone for a while.  And we tried having a support network and resources to help when we stumble.  Guess which option worked better?

It has taken a long time for all of us to accept this.  Asking for help is scary.  Accepting help is scarier.  Trusting someone else with inner thoughts and safety is probably scariest.  It took me eleven years to get where I am now.  Some of my parts are in the same place.  Others are not.

And we are nowhere near finished with the recovery journey.

Questions for Readers:

How long will it take you?  Are you willing to persist in spite of the road blocks and relapses?  Will you keep an open mind?  Will you learn to trust yourself one day?

I hope the answers are yes someday, if not now.

Recovery Challenge: Self-harm part 3

Coping Techniques Explained

Cognitive Behavioral Therapy (CBT)

The first effective coping technique I learned in therapy was cognitive behavioral therapy (CBT).  The psychologist used this to help with my original diagnosis: clinical depression with anorexia nervosa and generalized anxiety disorder.  Practicing this taught me how to identify emotions and negative thinking patterns so I could change them.  The psychologist also taught me how my emotions and thoughts influenced my behavior.  By changing one, I could change the others.

Self-Help Books, Websites, etc.

The next group of techniques came from a series of books.  Working through lessons in the books taught me how to identify triggers, calm myself down when I felt the anxiety, relax, and refocus on the present.  By using those strategies, I could recognize patterns in my behavior and work to stop self-harm behaviors by using different coping strategies instead.  They helped me find new and creative ways to apply my CBT skills and improve on existing skills like meditation and deep breathing too.  I have a list of my favorite self-help resources here.

Caveats for self-help resources:

  • These resources are guides, not substitutes for qualified professional assistance
  • They can provide factual information, lessons for learning the basic techniques, and useful suggestions
  • They cannot solve your problems and make the issues go away
  • Not all resources are created equal; be wary of anything you read and/or listen to, especially if the resource claims it can solve your your problem
  • If you get frustrated or don’t understand, it’s not your fault.  This may be a good time to reach out and find other supports to assist you on the recovery path.
  • Finally, read, visit, or listen to multiple information sources on the same topic before deciding which techniques to use

Dialectical Behavioral Therapy (DBT)

The third coping technique I learned was dialectical behavioral therapy (DBT).  The creator of this therapy is a survivor and renowned therapist named Marsha Linehan.  Ms. Linehan has Borderline Personality Disorder and created DBT to help her cope with overwhelming emotions and her reactions to them.  I use DBT for feelings of anger, shame, and guilt.  And to help me cope with body memories.  My parts use DBT to help with distress tolerance and emotion regulation that comes from being triggered into flashbacks and nightmares all the time.

If you haven’t noticed already, my internal and external lives are very different with their own perspectives, priorities, and experiences.  Living on the inside and the outside simultaneously requires cooperation and compromise from everyone involved.  It also requires a lot of trust and the development of a system to keep our internal world functional and running smoothly.  That brings me to the final coping technique addressed in this post: Internal Family Systems.

Internal Family Systems (IFS) Model

We are lucky because we are all aware of each other and want to live a full, enjoyable, healthy life together.  That means we work together and help each other instead of working against each other and hurting each other.  We feel safe enough to ask for help, to set individual and group boundaries, and to use open communication to address problems instead of holding it in or casting blame.  Not everyone with DID is that lucky.

I learned about IFS from my current therapist and started using it actively in 2012.  The main point of IFS is that every part has a voice and gets heard.  On the inside, all important decisions are made by committee using 1) majority vote; or 2) unanimous vote.  We have also created a “family hierarchy” of sorts so that everyone shares essential chores and responsibilities equal to their age, developmental stage, and ability.  For example, adults take on adult responsibilities like work, transportation, finances, etc.  Adolescents have chores, responsibilities, and time to explore.  Children get to be children and have chores to complete every day.

We all work together to establish and maintain communication lines.  We all have to compromise and find solutions that work for the system when flashbacks and other symptoms threatens to overwhelm us.  We are all responsible for making good choices, working together, making our internal and external worlds safe, and learning coping strategies to weather the ups and downs of recovery.  Especially when parts get stuck in the past, trapped by traumatic memories (monsters), or lost and get triggered to the point of using automatic defense mechanisms and self-harm to cope.

Without learning and using IFS, none of us would be in the healthy, safe, happy place that allows us to share this information on the blog and the website.

Other Info

Here is a list of some other useful coping techniques.  I do not mention them above because they require assistance from an experienced mental health provider to be most effective.

  • Hypnotherapy
  • EMDR
  • Sensorimotor Psychotherapy
  • Trauma sensitive yoga and other types of moving meditation

Medication

Medication is not a coping technique or strategy I use except under certain conditions:

  • Not sleeping for 36 or more hours
  • Intense physical pain that keeps me awake and unable to move
  • Real physical illness like a cold or the flu

I choose not to use medication because medication makes me physically ill.  I am extremely chemical sensitive and will get the side effects from even the smallest doses (the 1 in 1,000 or 1 in 100 person described in the small print).

This does not mean I am against using medication.  If medication works, please use it.  But don’t expect to see many posts about the benefits of medication as a healthy coping strategy here.  I cannot speak to that topic and work hard not to pass judgement or bias readers for or against any strategies here.