looseFACTS
This body of work titled ‘looseFACTS’ aims to help others find their way to share their experience living with these invisible illnesses and disabilities. It began a collection of works created since a diagnosis of Hypermobile Ehlers Danlos (HEDs) was received by the artist just before EDS awareness month (May) in 2020. An artwork was created every month for two years and some have been shared with close community support groups who requested a book be collated as they believed the images gave language to conversations they had no words for with loved ones. Since this time the project has expanded to covering a number of invisible disabilities and illnesses starting with those associated with many of the connective tissue disorders starting with those that the artist has been diagnosed with or has direct connection with.
​
The book will be titled looseFACTSwhich is a play on words. Ehlers Danlos Syndrome is often referred to as a loose connective tissue disorder and all illustrations are accompanied by peer reviewed evidence supporting the the artists interaction with her disability described in the illustrations. the book will be available shortly and will not only describe the information backed by peer reviewed literature but will also detail her personal lived experience as some lone living with multiple invisible pains.
All artworks are for sale in this exhibition. Please do not hesitate to contact the artist for prints or commissions
EDS: bodies loosely built
Ehlers Danlos Syndrome (EDS) refers to a group of disorders that affect the connective tissue, making it weak and easy to damage. Connective tissue gives structure and support to joints, skin, blood vessels, and organs. Problems with connective tissue causes mobility issues and can present the risk of injury.
At the core of all HSDs, along with other heritable disorders of connective tissue, is the presence of joint hypermobility (JH). JH (also double jointed, joint laxity, or joint hyperlaxity) describes the capability of a joint (or group of joints) to move passively or actively beyond normal limits along physiologic axes.
Paediatric EDS symptom scan appear at birth or soon afterward and can include abnormal scarring, autonomic nervous system issues, cardiovascular problems, early-onset osteoarthritis, elastic or stretchy skin that bruises easily, extra folds of skin, gastrointestinal issues, internal bleeding, joint hypermobility, organ rupture, osteoporosis, bleeding, and sometimes velvety skin.
Children may not become noticeably symptomatic until their teen years. Symptoms also can be triggered by a virus or other trauma. Many young patients’ symptoms are so mild that they go unnoticed, while others may be severely affected.
Patients with Ehlers-Danlos syndromes are often referred to as “zebras,” which references a popular medical school mantra, “When you hear hoof beats, think horses, not zebras,” equating zebras with rare diseases. In the wild, a group of zebras is called a dazzle. The #DazzleTogether campaign encourages the community to work together as a “dazzle” to raise awareness and funds for research throughout the month of May.
​
Challal, S., Minichiello, E., Funalot, B., & Boissier, M. C. (2015). EhlersDanlos syndrome in rheumatology: Diagnostic and therapeutic challenges. Joint, Bone, Spine, 82(5), 305–307. Hershenfeld SA, Wasim S, McNiven V, Parikh M, Majewski P, Faghfoury H, So J. Psychiatric disorders in Ehlers-Danlos syndrome are frequent, diverse and strongly associated with pain. Rheumatol Int. 2016 Mar;36(3):341-8. doi: 10.1007/s00296-015-3375-1. Epub 2015 Oct 3. PMID: 26433894. Syx, D., De Wandele, I., Rombaut, L., & Malfait, F. (2017). Hypermobility, the Ehlers-Danlos syndromes and chronic pain. Clinical and Experimental Rheumatology, 107(5), 116–122.Moriña, Anabel. (2024). When what is unseen does not exist: disclosure, barriers and supports for students with invisible disabilities in higher education. Disability & Society. 39. 914-932. 10.1080/09687599.2022.2113038. https://www.ehlers-danlos.com/is-eds-rare-or-common/. Accessed at November 26, 2022
You cannot see invisible pain
Invisible illnesses and disabilities are hard for others to understand. If people could see my pain, what would it look like?
-
They would see the pain in my hands and the pain in my heart when I can’t use my hands to be creative, to show love to care for myself.
-
You would see it in my back when I can’t stand up and the pain is too intense to even scream and sitting is nearly impossible.
-
You’d see my fear when I walk into a venue that should be #accessible but all the chairs are too low for me to sit in without hurting myself.
-
You would see it in my neck and shoulders where it causes numbness, pins and needles or the feeling of water running down one side of my body and all plans for the day go out the window because now the only place I can exist is in my bed.
-
You would see it in my feet when the bones that are meant to stabilise me sublux (partially dislocate) or fully dislocate when I put my feet on the ground and it makes it difficult not to fall down with every step I take. You’d see the pain of isolation of not being able to attend places, events and venues because of lack of accessibility.
-
You’d see it in my heart when my blood pressure drops and I faint or in my face when my heart rate skyrockets to compensate my low BP and it makes me vomit.
-
You’d see it in my nervous system which is constantly in a state of flight fright adrenal overload from simply existing in a body that I can’t trust and o bite my lip to distract from the pain.
-
You’d see it in my head with the chronic #migraine and the brain fog that makes me forget my own name.
-
You’d see the pain in my spirit from being #gaslit and mistreated by a medical community that are supposed to help you.
But you see me smiling and laughing. you don’t see the pain except for the occasional glimpse into my life. You think I’m in no pain, because when you see me, I’m so excited to be part of your world that I don’t want to waste another moment on pain… I’d rather be with you.
​Dabbas N, Saker R, Blakeley C. Multiple spontaneous dislocations in a patient with Ehlers-Danlos syndrome. Emerg Med J. 2008 Mar;25(3):175-6. doi: 10.1136/emj.2006.045898. PMID: 18299375. Gazit Y, Jacob G, Grahame R. Ehlers-Danlos Syndrome-Hypermobility Type: A Much Neglected Multisystemic Disorder. Rambam Maimonides Med J. 2016 Oct 31;7(4):e0034. doi: 10.5041/RMMJ.10261. PMID: 27824552; PMCID: PMC5101008. Hakim A. Hypermobile Ehlers-Danlos Syndrome. 2004 Oct 22 [updated 2024 Feb 22]. In: Adam MP, Feldman J, Mirzaa GM, Pagon RA, Wallace SE, Bean LJH, Gripp KW, Amemiya A, editors. GeneReviews® [Internet]. Seattle (WA): University of Washington, Seattle; 1993–2024. PMID: 20301456. Syx D, De Wandele I, Rombaut L, Malfait F. Hypermobility, the Ehlers-Danlos syndromes and chronic pain. Clin Exp Rheumatol. 2017 Sep-Oct;35 Suppl 107(5):116-122. Epub 2017 Sep 28. PMID: 28967365.
Stuffed: EDS patients experience chronic pain and fatigue
Pain is one of the main factors contributing to mental health problems in EDS. Many patients may also be anxious about experiencing dislocations as they go about their daily lives. The disease may cause sleep disturbances, resulting in a lack of enough restful sleep. Finally, chronic fatigue can exacerbate or contribute to mental health problems. Deterioration of quality of life is mainly associated with pain and fatigue.
At least 90 percent of EDS patients experience chronic pain that can include:
-
Frequent headaches
-
Abdominal pain
-
Joint pain. (Any of the joints can hurt, and sometimes multiple joints hurt simultaneously.)
-
Pain in the face or jaw
-
Nerve pain
-
Arthritis
-
Back pain
-
Neck pain
-
Pain when completing daily tasks, such as holding a pen or pencil
-
Generalized, body wide pain
-
Pain from previous surgery
-
Fatigue
-
Post exertion malaise
Fatigue is particularly common in hypermobile EDS (hEDS). Contributing factors can include sleep disorders, muscle deconditioning (loss of muscle tone and endurance), headaches, and nutritional deficiencies. It is important to exclude other causes, such as anaemia or a chronic infection.
Castori, M., Morlino, S., Celletti, C., Celli, M., Morrone, A., Colombi, M., Camerota, F. and Grammatico, P. (2012), Management of pain and fatigue in the joint hypermobility syndrome (a.k.a. Ehlers–Danlos syndrome, hypermobility type): Principles and proposal for a multidisciplinary approach†. Am. J. Med. Genet., 158A: 2055-2070. Syx, D., De Wandele, I., Rombaut, L., & Malfait, F. (2017). Hypermobility, the Ehlers-Danlos syndromes and chronic pain. Clinical and Experimental Rheumatology, 107(5), 116–122.Moriña, Anabel. (2024). When what is unseen does not exist: disclosure, barriers and supports for students with invisible disabilities in higher education. Disability & Society. 39. 914-932. 10.1080/09687599.2022.2113038. https://ehlersdanlosnews.com/health-insights/fatigue-and-dealing-with-it-when-you-have-eds/ https://ehlersdanlosnews.com/health-insights/sleep-disorders-in-ehlers-danlos-syndrome/
People with invisible disabilities experience isolation
People with disabilities may experience various forms of isolation, including social isolation, physical isolation, and emotional isolation. Social isolation involves feeling disconnected from others and experiencing limited social interactions or support networks due to barriers such as inaccessible environments or stigma. Physical isolation refers to being physically separated from others due to mobility limitations, inaccessible transportation, or lack of accommodations. Emotional isolation occurs when individuals feel misunderstood, marginalized, or excluded from social activities or relationships due to their disability, leading to feelings of loneliness, low self-esteem, and depression. These forms of isolation can negatively impact the overall well-being and quality of life of people with disabilities. Many people with invisible disabilities may experience isolation due to a variety of factors:
-
Misunderstanding and Stigma: Several studies have explored how misunderstandings and stigmas surrounding invisible disabilities can lead to social isolation. For example, research by Werner et al. (2017) found that individuals with invisible disabilities often face skepticism, disbelief, and judgment from others, which can contribute to feelings of social exclusion.
-
Challenges in Disclosure: Studies such as that by Moriña, Anabel. (2024) have highlighted the challenges individuals with invisible disabilities face when disclosing their condition to others. Fear of negative reactions, discrimination, or being treated differently can lead to reluctance to disclose, resulting in social isolation and a lack of support.
-
Limited Accessibility and Participation: Research by Kapsalis et al. (2024) has examined the barriers individuals with invisible disabilities face in accessing public spaces, employment opportunities, and social activities due to a lack of accommodations or understanding. This limited accessibility can contribute to feelings of isolation and exclusion.
-
Psychological Impact: Studies, such as that by Kattari et al. (2018), have explored the psychological impact of living with an invisible disability, including feelings of loneliness, depression, and anxiety. These psychological factors can contribute to social withdrawal and isolation from friends, family, and community.
-
Support Networks: Research, such as that by Reblin and Uchino (2008), has emphasized the importance of social support networks for individuals with invisible disabilities. Lack of understanding or empathy from friends, family, or healthcare providers can lead to a lack of social support, increasing feelings of isolation.
Werner S, Hochman Y. Social inclusion of individuals with intellectual disabilities in the military. Res Dev Disabil. 2017 Jun;65:103-113. doi: 10.1016/j.ridd.2017.04.014. Epub 2017 May 7. PMID: 28495659. Moriña, Anabel. (2024). When what is unseen does not exist: disclosure, barriers and supports for students with invisible disabilities in higher education. Disability & Society. 39. 914-932. 10.1080/09687599.2022.2113038. Kapsalis, E., Jaeger, N., & Hale, J. (2024). Disabled-by-design: effects of inaccessible urban public spaces on users of mobility assistive devices – a systematic review. Disability and Rehabilitation: Assistive Technology, 19(3), 604–622. https://doi.org/10.1080/17483107.2022.2111723 Kattari, S. K., Olzman, M., & Hanna, M. D. (2018). “You Look Fine!”: Ableist Experiences by People With Invisible Disabilities. Affilia, 33(4), 477-492. https://doi.org/10.1177/0886109918778073 Reblin M, Uchino BN. Social and emotional support and its implication for health. Curr Opin Psychiatry. 2008 Mar;21(2):201-5. doi: 10.1097/YCO.0b013e3282f3ad89. PMID: 18332671; PMCID: PMC2729718.
Dating with disability requires a careful & planned strategy
Assistive technologies play a vital role in enhancing the independence, mobility, and quality of life for individuals with Ehlers-Danlos Syndrome (EDS). Assistive technologies are prescribed by Occupational therapists and physiotherapists and include devices such as mobility aids, orthotic braces, adaptive tools, mobility aids, wheelchairs and ergonomic equipment help address the unique challenges associated with joint hypermobility, instability, and chronic pain in EDS.
Assistive technologies, (ATs) boost independence and quality of life for those with Ehlers-Danlos Syndrome (EDS). Symptom fluctuation influences their use, with some relying more on aids in the afternoon due to worsening symptoms. Reasons include symptom variability, fatigue management, orthostatic intolerance, and pain relief. The decision to use aids varies based on individual needs and preferences. It's crucial to recognize that fluctuations in symptoms don't invalidate their experiences but reflect the nature of EDS. Ultimately, the goal is to optimize mobility and comfort while navigating the challenges of EDS.
This does not mean their symptoms are not real or” fake”, it simply means that EDS is a fluctuating condition.
It's important to note that the decision to ATs such as use crutches, a wheelchair or other mobility aids is highly individualized and based on the unique needs and preferences of each person with EDS. While some individuals may find that using a wheelchair or other assistive technologies in the afternoon helps manage symptoms and improve function, others may choose to use a wheelchair more consistently throughout the day or only as needed during periods of increased symptom severity. Ultimately, the goal is to optimize mobility, comfort, and independence while managing the challenges of living with EDS.
Levine D, Work B, McDonald S, Harty N, Mabe C, Powell A, Sanford G. Occupational Therapy Interventions for Clients with Ehlers-Danlos Syndrome (EDS) in the Presence of Postural Orthostatic Tachycardia Syndrome (POTS). Occup Ther Health Care. 2022 Jul;36(3):253-270. doi: 10.1080/07380577.2021.1975200. Epub 2021 Sep 14. PMID: 34520307. Minhas D. Practical management strategies for benign hypermobility syndromes. Curr Opin Rheumatol. 2021 May 1;33(3):249-254. doi: 10.1097/BOR.0000000000000798. PMID: 33741806. Song B, Yeh P, Nguyen D, Ikpeama U, Epstein M, Harrell J. Ehlers-Danlos Syndrome: An Analysis of the Current Treatment Options. Pain Physician. 2020 Jul;23(4):429-438. PMID: 32709178.
Brain Fog: Mental haziness, unclear thinking, cognitive fuzziness
brain fog, also known as cognitive dysfunction or cognitive impairment, is a common symptom reported by individuals with Ehlers-Danlos Syndrome (EDS). It refers to difficulties with concentration, memory, executive function, and mental clarity. While the exact mechanisms underlying brain fog in EDS are not fully understood, several factors may contribute to its occurrence:
-
Autonomic Dysfunction: EDS can affect the autonomic nervous system, which regulates various bodily functions, including blood pressure, heart rate, and cognitive function. Dysautonomia, a common feature of EDS, may contribute to brain fog by disrupting cerebral blood flow and oxygen delivery to the brain.
-
Chronic Pain and Fatigue: Many individuals with EDS experience chronic pain and fatigue, which can significantly impact cognitive function. Pain and fatigue can interfere with sleep quality, impair attention and concentration, and lead to mental exhaustion, all of which contribute to brain fog.
-
Joint Hypermobility: Joint hypermobility, a hallmark feature of EDS, can affect proprioception and kinesthesia, leading to difficulties with spatial awareness and motor coordination. These impairments may contribute to difficulties with balance, posture, and fine motor tasks, which can exacerbate brain fog.
-
Connective Tissue Abnormalities: EDS is characterized by defects in collagen and other connective tissues, which play a crucial role in maintaining the structural integrity of blood vessels, nerves, and the extracellular matrix within the brain. Connective tissue abnormalities in the brain may contribute to cerebral hypoperfusion, neuroinflammation, and neuronal dysfunction, all of which can impair cognitive function.
-
Dysfunctional Immune Response: Some individuals with EDS may experience immune dysregulation and chronic inflammation, which have been implicated in cognitive dysfunction. Inflammatory mediators released by activated immune cells can cross the blood-brain barrier and trigger neuroinflammation, oxidative stress, and neuronal damage, contributing to brain fog.
Baeza-Velasco C, Pailhez G, Bulbena A, Baghdadli A. Joint hypermobility and the heritable disorders of connective tissue: Clinical and empirical evidence of links with psychiatry. Gen Hosp Psychiatry. 2015;37(1):24-30. doi:10.1016/j.genhosppsych.2014.11.001 Castori M, Camerota F, Celletti C, et al. Natural history and manifestations of the hypermobility type Ehlers-Danlos syndrome: A pilot study on 21 patients. Am J Med Genet A. 2010;152A(3):556-64. doi:10.1002/ajmg.a.33181 Hakim AJ, Grahame R. Non-musculoskeletal symptoms in joint hypermobility syndrome. Indirect evidence for autonomic dysfunction? Rheumatology (Oxford). 2004;43(9):1194-5. doi:10.1093/rheumatology/keh303
Diagnostic wandering
Individuals with Ehlers-Danlos Syndrome (EDS) may sometimes experience misdiagnosis or misunderstanding of their symptoms, leading to the assumption of mental health issues. This can occur due to the overlap of certain symptoms between EDS and mental health conditions, as well as the complexity of diagnosing and managing EDS-related symptoms.
The average time to diagnosis of an Ehlers-Danlos syndrome (EDS) or hypermobility spectrum disorder (HSD) is 10-18 years: for some, it can take decades. Early diagnosis is crucial to positive patient health.
People have been turned away from Emergency Rooms or had treatment delayed due to misconceptions or lack of knowledge on the different subtypes of EDS, HSD, and their associated conditions. This needs to change, and awareness is key.
The combined prevalence of HSDs and hEDS is 1 in 600 to 1 in 900. Expert opinion is that HSDs are common and that hEDS is likely to be common.
The current prevalence figures are also likely underestimates because many people with EDS or HSDs experience a delay in diagnosis. Diagnostic wandering was reported for 60% of patients. The most frequent diagnoses previously evoked were fibromyalgia(26%), psychological diseases (21%), and inflammatory/degenerative joint diseases (16%).
They share some symptoms with fibromyalgia, and this diagnosis was frequently wrongly made because of widespread pain and major asthenia. But hEDS patients have joint hypermobility and recurrent joint dislocations since childhood, which help physicians to distinguish those diagnoses. Other doctors do not believe patients about their invisible pain and injuries, and misdiagnose them as having a psychological disease.
-
Challal, S., Minichiello, E., Funalot, B., & Boissier, M. C. (2015). EhlersDanlos syndrome in rheumatology: Diagnostic and therapeutic challenges. Joint, Bone, Spine, 82(5), 305–307.
-
Hershenfeld SA, Wasim S, McNiven V, Parikh M, Majewski P, Faghfoury H, So J. Psychiatric disorders in Ehlers-Danlos syndrome are frequent, diverse and strongly associated with pain. Rheumatol Int. 2016 Mar;36(3):341-8. doi: 10.1007/s00296-015-3375-1. Epub 2015 Oct 3. PMID: 26433894.
-
Syx, D., De Wandele, I., Rombaut, L., & Malfait, F. (2017). Hypermobility, the Ehlers-Danlos syndromes and chronic pain. Clinical and Experimental Rheumatology, 107(5), 116–122.Moriña, Anabel. (2024). When what is unseen does not exist: disclosure, barriers and supports for students with invisible disabilities in higher education. Disability & Society. 39. 914-932. 10.1080/09687599.2022.2113038.
-
https://www.ehlers-danlos.com/is-eds-rare-or-common/. Accessed at November 26, 2022
Dating with disability requires a careful & planned strategy
Dating with an invisible disability can present unique challenges due to various factors, including stigma, disclosure concerns, and navigating interpersonal relationships. Here are some potential reasons why dating with an invisible disability may be difficult:
-
Disclosure Concerns: Individuals with invisible disabilities may struggle with, when and how to disclose their condition to a potential romantic partner. Fear of rejection, stigma, or negative reactions can lead to hesitation or avoidance of disclosing one's disability.
-
Misunderstanding and Stigma: Stigma can contribute to misconceptions or negative stereotypes about individuals with these conditions. Lack of awareness or understanding among potential partners may lead to judgment, scepticism, or discomfort with the idea of dating someone with a disability.
-
Impact on Social Activities: Invisible disabilities may impact an individual's ability to participate in social activities. Limitations or accommodations related to the disability may pose logistical challenges or create barriers to shared experiences with a romantic partner.
-
Emotional Impact: Many people with invisible disabilites may have feelings of frustration, isolation, or insecurity which may affect self-esteem, confidence, and the ability to initiate or sustain romantic relationships.
-
Communication and Support Needs: Clear communication about needs, boundaries, and accommodations can be crucial for navigating the relationship, but may require additional effort or understanding from all parties involved.
-
Perceived Burden or Dependency: Individuals with invisible disabilities may worry about being perceived as a burden or dependent on their partner for support. Concerns about how the disability may affect the dynamics of the relationship or the partner's perception of them can create anxiety or self-doubt.
-
Economic impact and independence: The eligibility of those receiving DSP may be affected if they get married, or live with a partner. The Carer Payment is means-tested, so your partner's income and assets may affect their eligibility for this payment. The NDIS may also reduce your payments for support worker assistance.
While dating with an invisible disability may present challenges, it's important to recognize that meaningful and fulfilling relationships are possible with understanding, empathy, and open communication. Building a supportive network, seeking out inclusive social environments, and connecting with others who share similar experiences can also help alleviate some of the challenges associated with dating with an invisible disability.
Hunt X, Swartz L, Carew MT, Braathen SH, Chiwaula M, Rohleder P. Dating persons with physical disabilities: the perceptions of South Africans without disabilities. Cult Health Sex. 2018 Feb;20(2):141-155. doi: 10.1080/13691058.2017.1334964. Epub 2017 Jun 21. PMID: 28633559. Tabassum K, Fox J, Fuller S, Hynes SM. Dating with a Diagnosis: The Lived Experience of People with Multiple Sclerosis. Sex Disabil. 2022;40(1):3-20. doi: 10.1007/s11195-021-09698-9. Epub 2021 May 26. PMID: 34075262; PMCID: PMC8153848. Zewude B, Habtegiorgis T. Willingness of youth without disabilities to have romantic love and marital relationships with persons with disabilities. Life Sci Soc Policy. 2021 Jun 21;17(1):5. doi: 10.1186/s40504-021-00114-w. PMID: 34154669; PMCID: PMC8215755.
Early diagnosis is crucial to positive patient health
n almost all health conditions, early diagnosis is crucial to positive patient health. As with many invisible pain conditions the first presentation often appears in childhood, however, the average time to diagnosis of an Ehlers-Danlos syndrome (EDS) or hypermobility spectrum disorder (HSD) is 10-18 years: for some, it can take decades.
Although, EDS is typically present from birth, symptoms can manifest at any age due to periods of deconditioning. Individuals with EDS or other chronic conditions are often dismissed, invalidated, or disbelieved by healthcare providers regarding their symptoms, experiences, or concerns. Due to the complex and variable nature of EDS, individuals may face challenges in obtaining an accurate diagnosis and appropriate medical care, leading to feelings of frustration, distrust, and marginalization within the healthcare system. This can lead to feeling gaslit by the medical system. Medical gaslighting can occur when healthcare providers minimize or trivialize the severity of symptoms, attribute symptoms to psychological causes without adequate medical evaluation, or suggest that symptoms are exaggerated or fabricated by the patient.
This invalidation of patients' experiences can have detrimental effects on their physical and mental well-being, contributing to delays in diagnosis, inadequate treatment, and a breakdown in the patient-provider relationship. Leading patients to dismiss serious conditions they should seek medical help for. Addressing medical gaslighting in EDS requires healthcare providers to listen to and validate patients' concerns, conduct thorough evaluations, and approach symptoms with empathy, respect, and openness to the complex nature of the condition.
Medical gaslighting experienced by individuals with EDS or other chronic conditions can contribute to internalized ableism and identity confusion. Internalized ableism refers to the internalization of societal prejudices and stereotypes about disability, leading individuals to devalue or stigmatize their own disability identity. When healthcare providers dismiss or invalidate the experiences of individuals with EDS, attributing their symptoms to imagined or exaggerated causes, it can undermine their confidence in their own perceptions and experiences, fostering self-doubt and internalized ableism. Resulting in individuals questioning the validity of their symptoms, minimizing their own needs, or feeling ashamed of their disability identity. Moreover, medical gaslighting may contribute to identity confusion as individuals struggle to reconcile their lived experiences with the disbelief or skepticism they encounter from healthcare providers.
Gatchel, R. J., Peng, Y. B., Peters, M. L., Fuchs, P. N., & Turk, D. C. (2007). The biopsychosocial approach to chronic pain: scientific advances and future directions. Psychological bulletin, 133(4), 581. Hirschfeld, R. M. (2001). The Comorbidity of Major Depression and Anxiety Disorders: Recognition and Management in Primary Care. Primary Care Companion to the Journal of Clinical Psychiatry, 3(6), 244–254. Karoscik, K. A., & Littrell, L. L. (2020). The Impact of Medical Gaslighting on the Mental Health of Women with Ehlers-Danlos Syndrome. The Journal of the American Osteopathic Association, 120(10), 684-689. Lumley, M. A., Cohen, J. L., Borszcz, G. S., Cano, A., Radcliffe, A. M., Porter, L. S., & Schubiner, H. (2011). Pain and emotion: a biopsychosocial review of recent research. Journal of Clinical Psychology, 67(9), 942-968.