Mental Health Resources
We find all manner and number of psychiatric and mental health challenges and diagnoses commonly co-occurring with Ehlers-Danlos Syndrome, especially depression and anxiety.
Unfortunately, too many doctors immediately stop listening to our complaints of very real physical pain and other trouble once these are identified. (Some of our family members do too.)
But that doesn’t stop them from deserving attention and treatment and support, even if we are diagnosed with a connective tissue disorder as well.
ETA 2023: I’m finding a LOT of complex PTSD, aka CPTSD (alternatively Relational or Interpersonal Trauma) common in the community. This seems to be common among neurodivergent people, especially autistics. I’m adding a few links targeting that especially too as I’m finding the role it plays in my own life now finally. I really like this particular broadcast of Think Out Loud by Dave Miller on OPB from October 2022 exploring just how helpful trauma informed teachers and doctors can be.
And I’m recognizing the combination or co-occurrence of ADHD and OCD, is semi-common among us. (Could explain hoarding for some of us along with the association between OCD and hypermobility noted since 2013.) As well as alexithymia, or delayed emotional recognition and processing.
Here are a few resources to that end. However, do not send me any unsolicited links, I will simply delete those requests. I am quite capable (as is my audience) of finding all I need by searching thank you. I’m not here to signal boost your site for ad clicks. (For some reason this topic is a honeypot for those seeking to do so.) Last updated November 27, 2023.
CPTSD and Codependency Support
I am NOT saying that HSD and the forms of EDS are due to trauma, but… I will say from personal experience that I feel strongly that childhood trauma, especially attachment and developmental trauma, can lend to a worse outcome later in life for those who carry the genes or traits of HSD or EDS. And, I have personally experienced stress and trauma to trigger onset cascades of joint instability since getting diagnosed myself in 2012. I believe this is thanks to my over-active mast cells responding and lending.
And, I’ve since realized that childhood trauma (walking on eggshells around an unstable/unsafe parent or carer, feeling unsafe for extended periods, being abandoned literally or just emotionally, having to be hypervigilant to stay safe) all lends to codependency in later relationships (even in the absence of any obvious substance use or addictions), in which we over function for others, at the neglect of ourselves. So I’m including that here too.
Also, I do not believe that trauma causes autism or ADHD as some professionals posit, but… I DO think it can exacerbate them, or lend to increased issues and symptomatology. I also can’t help wondering if all the DSM criteria for both are based only on traumatized kids/people? Just a thought…
- Invisible Children: Kids of Mentally Ill Parents Often Overlooked 2020 CPTSD Foundation
- Out of The Storm: Relational Trauma & Complex PTSD (Complex Relational Trauma Response)
- REBROADCAST: Understanding Childhood Trauma via Think Out Loud on OPB 2019
- Codependency, Trauma and the Fawn Response – Pete Walker, LCSW
- Childhood trauma leads to life-long chronic illness – via ACES too high
- Trauma Geek resource for parents and everyone by a fellow neurodivergent EDSer
- Identifying Narcissism (all types, and some may be more subtle than you think)
- Video: The 3 SIGNS you’re dealing with a Covert Narcissist – Dr. Ramani YouTube
- 10 Signs of Covert Narcissism
- A Neurodiversity Paradigm Lens on Polyvagal Theory – Trauma Geek 2023
- Codependents Anonymous (affects more people than we think even in absence of substance abuse, it’s more of a behavioral pattern, think of as being “too nice”)
- Gaslighting. It started in your childhood. Dr. Ross Rosenberg 2019
- NICABM has great info on healing trauma and working with PTSD of all kinds for all ages.
- Stress Effects and Stress Managment
- Tension, Stress and Trauma Release (TRE)
- Post Traumatic Stress Disorder (including Chronic PTSD)
- Each Person Counts – recovery help for borderline personality disorder, which is beginning to be seen as a natural response to childhood trauma, known or not
- Short Ho’oponopono meditation (self-forgiveness)
- Longer Before Sleep Ho’oponopono meditation
Some YouTube channels that do a great job addressing CPTSD and trauma (no affiliations):
- Tim Fletcher (Pastor, but doesn’t preach much at all and only after secular content first)
- Patrick Teahan, LCSW
- Dr. Kim Sage
- Doc Snipes
- Crappy Childhood Fairy (Anna Runkle)
- Irene Lyon (runs Smart Body Smart Mind somatic experiencing therapy for healing trauma)
General Mental Health Support Sites and Blogs
- National Alliance on Mental Illness (US) – ongoing classes and support for the mentally ill and their families and caregivers
- Setting Healthy Boundaries (good for everyone)
- Dialectical Behavioral Therapy (can help curb spiraling emotions, suicidal ideations and self-harming behaviors)
- Dialectical Behavioral Therapy in the British Isles
- New ALPIM Syndrome Linking Panic Disorder to Physical Illness (likely EDS) 2015
Many EDSers find they have signs of histadelia (high arousal, emotional states, depression) from likely MCAD and Histamine Intolerance too, which can be eased by trigger avoidance and use of anti-histamines (in concert with your doctors!)
Others may find their depression and anxiety affected by their methylation levels as well - Signs of Speech Cluttering via the Stuttering Foundation (semi-common in those with ADHD)
- This could be why you’re depressed or anxious – Johann Hari TED talk 2019
- Symptoms of Depression No One Talks About – Authentically Emily
- Anti-ableist alternatives to “PHOBIA” when describing oppression – Shannon Collins
- Mood symptoms and suicidality across the Autism spectrum 2019 Dell’Osso, Carpita, Mudi et al
- Number Story – helping people to recognize and overcome adverse childhood events (ACES)
- Hoarding: The Basics via Anxiety and Depression Association of America
- Overcome Compulsive Hoarding Podcast UK blog
- Worry Wise Kids
- Anxiety and EDS via EDSH Info
- Mental Health Awareness for Teens
- The Anti-Anxiety Food Solution (Trudy Scott)
- Three with ADHD blog
- Understood.org – help for uncovering your child’s neurodivergence and finding support for same
- The Spoon Theory of energy conservation for the chronically ill by Christine Miserandino, great for sharing with friends & family
- Useful Links for Chronic Illness (all kinds) via @PajamaDaze
- Neuroplasticity Resources (you can retrain your brain to correct actual neuroimbalances to some degree. See also the book “Disconnected Kids” by Melillo, R. MD)
- What is a Covert Narcissist Very Well Mind 2022
- How to Deal With a Narcissist – Carla Corelli 2022
- Anxiety Disorders Resource Center of the AACAP
- Resources for Military Service Personnel and Families via Cornell University
- Academic Accommodations for Students with Psychiatric Disabilities via UW
- Process Coaching for healing emotional trauma
- NICABM has great info on healing trauma and working with PTSD of all kinds for all ages.
- Stress Effects and Stress Managment
- Neuroplasticity Resources (you can retrain your brain to correct actual neuroimbalances to some degree. See also the book “Disconnected Kids” be Melillo, R. MD)
- The Narcissist Family Files – great resource for children of narcissistic parents (many of us)
- How I Realized My Mom was a Narcissist via Tonic (more common than we think in our families, can be true of any member, good advice for all)
- 14 Ways Narcissists Can be Like Cult Leaders – via Psych Central
- Borderline Personality Disorder: A Dysregulation of the Endogenous Opioid Regulation System? 2010 Psychological Review, Bandelow, Schmal et al
- People Who Are Double-Jointed Are More Likely to Be Anxious – 2015 Scientific American
- Society for Research into Empathy, Cruelty and Sociopathy Resources
- Sleep and mental health via Online Mattress Review
- Children who experience adverse childhood events may have worse chronic pain symptoms March 2022 Eric Martin in Healio Rheumatology
- Spotlight on the Emerging Field of Immunopsychiatry 2023
Journal Articles on the Comorbidity of Hypermobility, MCD and Psychiatric Issues
- Dr Pradeep Chopra: response to the paper on psychologic and psychiatric aspects of the Ehlers-Danlos syndromes 2022 via EDS Awareness
- Brain structure and joint hypermobility: relevance to the expression of psychiatric symptoms BJP 2012
- Psychopathological manifestations of joint hypermobility and joint hypermobility syndrome/ Ehlers-Danlos syndrome, hypermobility type: The link between connective tissue and psychological distress revised. 2015
- Variant connective tissue (joint hypermobility) and dysautonomia are associated with multimorbidity at the intersection between physical and psychological health Nov 2021 AmJMedGen Csecs, Dowell, Savage et al
- Emotion processing in joint hypermobility: A potential link to the neural bases of anxiety and related somatic symptoms in collagen anomalies. 2015 Mallorquí-Bagué N, et al. Eur Psychiatry
- Mast cells and mental health via Mast Cell Aware 2019
- Brain mast cells link the immune system to anxiety-like behavior 2008 Nautiyal, Ribeiro, Pfaff et al
- Joint hypermobility and autonomic hyperactivity: relevance to neurodevelopmental disorders 2014 Eccles, Iodice et al
- Psychiatric disorders in Ehlers-Danlos syndrome are frequent, diverse and strongly associated with pain $pringer 2015 Hershenfeld, Wasim et al
- Unexpected Association between joint hypermobility syndrome/Ehlers-Danlos Syndrome hypermobility type and obsessive-compulsive disorders 2014 (Tagging in an article on the co-occurrence of ADHD and OCD here too.)
- The relationship between benign joint hypermobility syndrome and psychological distress: a systematic review and meta analysis Rheumatology 2014
- Nationwide population-based cohort study of psychiatric disorders in individuals with Ehlers–Danlos syndrome or hypermobility syndrome and their siblings 2015 Cederloff, Larsson et al
- Neurovisceral phenotypes in the expression of psychiatric symptoms 2015 Eccles et al
- Ingestion of Lactobacillus strain regulates emotional behavior and central GABA receptor expression in a mouse via the vagus nerve 2011 PubMed
- Pseudo-psychiatric symptoms in EDS patients Dr. Pocinki EDNF Conf 2013
- Nationwide population-based cohort study of psychiatric disorders in individuals with Ehlers–Danlos syndrome or hypermobility syndrome and their siblings 2016 Cederloff, Larsson et al, BMC Psychiatry
- Immunopsychiatry: Important facts – April 2017 Khandaker, Danzer, Jones
- Blog post on how mast cell disease can affect mood, anxiety and depression by Lisa Klimas
- Pain and gastrointestinal dysfunction are significant associations with psychiatric disorders in patients with Ehlers–Danlos syndrome and hypermobility spectrum disorders: a retrospective study 2019 Wasim, Suddaby et al
- Ehlers-Danlos-Tschernogobow Syndrome: A Frequent, Rarely Diagnosed Disease whose Patients are often the Victim of an Abusive Psychiatrization 2017 Hamonet, Ducret
- A Link Between Schizophrenia and Vascular Alterations in the Brain Martins-de-Souza et al via Neuroscience News January 2023
The following may include some duplication of the above. I pulled it from the relevant subsection on my MCAD Resources page:
Mental Health and Mast Cell Activation Diseases (Masto and MCAS)
- Mixed organic brain syndrome as a manifestation of mastocysosis 1986
- Mast cells’ involvement in inflammation pathways linked to depression: evidence in mastocytosis Molecular Psychiatry 2016
- Many patients find they have signs of histadelia (high arousal, emotional states, depression) from high hhistamine levels and Histamine Intolerance too.
Others may find their depression and anxiety affected by their methylation levels as well - The histamine (mast cell) depression link via Low Histamine Chef YY 2014
- Mast cell activation disease: An underappreciated cause of neurologic and psychiatric symptoms and diseases Pubmed Afrin, Pohlau et al 2015
- Mast cells and neuroinflammation 2014 Dong, Zhang, Qian
- Mast cells, glia and neuroinflammation: partners in crime? Skaper, Facci, Giusti 2014
- Brain mast cells link the immune system to anxiety-like behavior Nautiyal, Ribeiro et al 2008
- Microglia and mast cells: two tracks on the road to neuroinflammation Skaper et al 2012
- Mast cells in neuroinflammation and brain disorders 2017 Hendriksen, van Bergeijk et al
- Mast cells in the brain – Old cells, new target 2017 Traina, Giovanna $
- Mast Cell Activation in Brain Injury, Stress, and Post-traumatic Stress Disorder and Alzheimer’s Disease Pathogenesis 2017 Kempuraj, Selvakumar, Thangavel et al
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