Chronic Invisible Illness and Suicide

Understanding the Relationship
between Chronic Illness and Suicide
Cathy L. Pederson, Ph.D.
Professor of Biology, Wittenberg University
Founder, Standing Up to POTS®

Chronic Invisible Illnesses
• Chronic illnesses: Prolonged,
don’t resolve spontaneously, and
are rarely cured completely
–Debilitating, but not fatal
• Invisible: Lack of diagnostic tests
–Blood tests normal
–Urine tests normal
–MRI, CT, ultrasounds normal
•Found predominantly in women
https://upload.wikimedia.org/wikipedia/commons/e/ee/Vacutainer_blood_bottles
.jpg
Standing POTS®
Raising awareness for Postural Orthostatic Tachycardia Syndrome
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Chronic, Invisible Illness:
Postural orthostatic tachycardia syndrome (POTS)
• 500,000 to 3 million cases in US
• 75% cases in women age 15-50
• ~ 1% of teens have POTS
• Triggers
• Viral infection
• Pregnancy
• Surgery or other trauma
• Characterized by
• Increased heart rate by 30 (adult)
or 40 (children) beats per minute
upon standing with no significant
change in blood pressure
http://standinguptopots.org/learning/pots-causes
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Postural orthostatic tachycardia syndrome (POTS)
• Dysfunction of autonomic nervous
system that affects
• Heart rate  tachycardia
• Blood vessel diameter  blood pooling,
lightheadedness, dizziness, headaches
• Pupil diameter  light sensitivity
• Food movement in digestive tract 
gastroparesis
• Body temperature  hot flashes, chills
http://standinguptopots.org/livingwithpots/profiles
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Myalgic encephalomyelitis and
chronic fatigue syndrome
• 1 million cases in US
– Most often in adult women
• Triggers include
– Viral infection
– Hormonal imbalances
• Dysfunction of
– Central nervous system
– Immune system
– Cellular energy metabolism
– Ion transport
http://bigeddyfilmfest.com/unrest/
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Myalgic encephalomyelitis and
chronic fatigue syndrome
• Symptoms
– Unrefreshing sleep Fatigue
– Headaches
– Loss of memory/concentration
– Enlarged lymph nodes
– Unexplained muscle/joint pain
– Extreme exhaustion more than 24 hours
after physical or mental exercise
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https://uppercervicalawareness.com/myalgic-
encephalomyelitis-chronic-fatigue-syndrome-basics/

Ehlers-Danlos Syndrome
• Genetic condition that affects
connective tissues that support
skin, bone, blood vessels, most
organs
• Range from mildly loose joints to
life-threatening complications
• 13 different types, most include
hypermobility
– 1 in 5,000 people have EDS (all
types combined)
http://nimbusmassage.com/2018/05/01/massage-ehlers-danlos-syndrome/
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Ehlers-Danlos Syndrome
• Disrupts connective tissue that
results in
– Loose joint articulation 
subluxations, dislocations
– Soft, velvety skin  stretchy,
bruising, abnormal scarring
– Tearing of blood vessels  internal
bleeding, organ rupture
(particularly vascular type) https://mastcellblog.wordpress.com/journey/edsphotos/
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Fibromyalgia
• ~4 million people in US
– 75-90% are adult women
• Triggers
– Physical trauma
– Surgery
– Infection
– Significant psychological stress https://prsrehabservices.com/patcenter/articles/dry-needling-fibromyalgia/
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Fibromyalgia
• Symptoms
– Widespread pain > 3 months
• Both sides of body
• Above and below waist
– Fatigue
– Cognitive difficulties
• Trouble concentrating
https://modiht.com/what-we-treat/fibromyalgia/fibromyalgia-pain-cycle/
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Chronic Invisible Illness:
Lyme Disease
•~ 300,000 people diagnosed
annually
•Transmitted by bite of infected
black legged (deer) ticks
•Early symptoms
•Fever
•Headache
•Fatigue
•Bullseye rash
•Cured with antibiotics if caught
early
http://www.michiganradio.org/post/its-tick-season-again-heres-what-you-should-look-out
https://www.bayarealyme.org/blog/lyme-disease-bullseye-rash/
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Chronic Invisible Illness:
Lyme Disease
•Symptoms of chronic Lyme
–Severe headaches
–Dizziness
–Problems with short term memory
–Neck stiffness
–Facial palsy
–Rashes
–Arthritis
–Intermittent pain in tendons,
muscles, joints and bones
–Heart palpitations
Standing POTS®
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https://www.lymedisease.org/lyme-basics/lyme-disease/symptoms/

Significant Impairment in Quality
of Life
•Problems with
–General health
–Sleep
–Brain fog
–Bodily pain
•Neuropathic pain
•Migraine headaches
•Abdominal pain
•Muscular and joint pain
–Physical and social functions
Pederson, C. L., & Brook, J. B. (2017). Health-related quality of life and suicide risk in postural
tachycardia syndrome. Clinical Autonomic Research, 27(2), 75-81.
Schmaling, K. B., & Betterton, K. L. (2016). Neurocognitive complaints and functional status among
patients with chronic fatigue syndrome and fibromyalgia. Qual Life Res, 25(5), 1257-1263.
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0
5
10
15
20
25
30
35
Dayspermonth
POTS Mean
Control Mean
Pederson, C. L., & Brook, J. B. (2017). Health-related quality of life and suicide risk in postural

Significant Impairment in Quality
of Life
•Significant minority (30%)
require help with activities of
daily living
–Eat
–Bathe
–Brush teeth/hair
–Dress
–Move around house
Pederson, C. L., & Brook, J. B. (2017). Health-related quality of life and suicide risk in
postural tachycardia syndrome. Clinical Autonomic Research, 27(2), 75-81. Standing POTS®
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https://www.advancedrm.com/measuring-adls-to-assess-needs-and-improve-independence/

Common Symptom of
Chronic Illness: Chronic Pain
• Pain is self-reported
– No good diagnostic tool
– Not objectively quantified
• Neuropathic pain
– Shooting
– Stabbing
– Burning
– Stinging
• Headaches
• Abdominal pain
• Chest pain
• Joint pain
http://img.medscape.com/thumbnail_library/dt_150916_chronic_pain_headache_migr
aine_800x600.jpg
https://dfzljdn9uc3pi.cloudfront.net/2013/37/1/fig-1-full.png
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Common Symptom of
• Central sensitization to pain
–Pain pathways increase with use
–More pain, increased sensitivity to pain
–Critical to treat pain in first 6 months
• Factors that increase sensitization
–Autonomic nervous system dysfunction
–Genetic predisposition
–Infections/inflammation
–Trauma
–Psychological factors
–Poor sleep
https://www.painscience.com/imgs/knob-pain-m.jpg
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Common Symptom of
• Prevalent in
• Myalgic encephalomyelitis, chronic
fatigue syndrome (ME, CFS)
• Ehlers-Danlos syndrome (EDS)
• Fibromyalgia
• Lyme disease
• Postural orthostatic tachycardia
syndrome (POTS)
• Chronic pain
– Interferes with activities of daily living
– Increases suicide ideation and
attempts1,2
https://www.7ad.com.au/martin-agatyn/martins-interviews/83430-
health-matters-july-23-chronic-pain
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1. Legarreta, M., Bueler, E., DiMuzio, J., McGlade, E., & Yurgelun-Todd, D. (2018). Suicide behavior
and chronic pain: An exploration of pain-related catastrophic thinking, disability, and descriptions of
the pain experience. J Nerv Ment Dis, 206(3), 217-222.
2. Racine, M. (2017). Chronic pain and suicide risk: A comprehensive review. Prog
Neuropsychopharmacol Biol Psychiatry, pii: S0278-5846(17)30467-0, 1-12.

Common Symptom of
Chronic Illness: Sleep Disturbance
• Decreased sleep efficiency
• Insomnia
• Nightmares
• Can be related to:
– Pain
– Sympathetic surges
– Lack of exercise
– Poor sleep hygiene
• Increases risk of suicide1
http://www.reilycenter.com/wp-content/uploads/blogs/sleep.jpg
1. Pederson, C. L., & Brook, J. B. (2017). Sleep disturbance linked to suicidal ideation in postural
orthostatic tachycardia syndrome. Nat Sci Sleep, 9, 109-115.
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Common Symptom of
Chronic Illness: Fatigue
• Unrelenting exhaustion not
relieved by rest
– Not the same as being tired
• Reduces
– Energy
– Motivation
– Concentration
– Emotional wellbeing
• Often the most debilitating
symptom of chronic illness
http://standinguptopots.org/
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Common Symptom of
Chronic Illness: Depression
• Link between chronic medical
illness and depression
– Heart disease
– Cancer
– Other well understood illnesses
• 50 % of people with chronic pain
are depressed1
• 35% of those with POTS reported
severe to extreme depression2
https://mydiaryofaquarterlifer.wordpress.com/2017/02/24/is-there-
such-a-thing-as-part-time-depression/
1. Nicholas, M. (2011). Depression in people with pain: There is still work to do. Scandinavian
Journal of Pain, 2(2), 45-46.
2. Pederson, C. L., & Brookings, J. B. (2018). Suicide risk linked with perceived
burdensomeness in postural tachycardia syndrome. Journal of Health Science & Education,
2(1), 1-8.
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Common Symptom of
Chronic Illness: Depression
• Must be diagnosed carefully
– Most depression screenings include
questions about physical symptoms
• Chronic illness symptoms artificially
increase depression scores
– Overlapping symptoms, including
changes in
• Appetite
• Weight
• Sleep
• Fatigue
• Ability to work
• Worry about health
• Interest in sex
https://medworksmedia.com/product/zung-self-rating-depression-scale/
Standing POTS®
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ToPederson, C., Gorman-Ezell, K., & Mayer, G. (2018). Assessing depression in those who are chronically
ill. Counseling Today, 60(9), 38-43.

Challenges for the Chronically Ill
• Lack of quality medical care
– Difficult to diagnose
– Difficult to treat
– Best case: manage symptoms well
• Stigma
– Not really sick, “all in your head”
– Symptoms from psychological rather
than physical problems
• Physical barriers
– Decreased mobility
– Poor memory
– Confusion
– Poor quality of life
http://standinguptopots.org/learning/pots-symptoms
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Challenges for the Chronically Ill
• Grieving the loss of a healthy body
• Feelings of isolation and loneliness
• Struggling to find a new role in school,
work, and relationships
• Loss of hope
• Perceive themselves as a burden
– Feel judged
– Withdrawal of love and/or support
• Financial pressures from
– Medical bills
– Medication
– Inability to work
http://www.nerdgirl.com/wp-content/uploads/2013/03/
480628_571779489523061_818166877_n.jpg
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U.S. Suicide Statistics
• 10th leading cause of death
in US for all ages
– 44,965 suicides in 2016
– 1.3 million made attempts
– One suicide every 13 minutes
• Women attempt suicide 3x
more than men
• Highest % with serious
suicidal thoughts
– 18-25 (8.8%)
– 26-49 (4.2%)
http://www.cdc.gov/violenceprevention/pdf/suicide-datasheet-a.PDF
Statistics taken from National Institute of Mental Health
https://www.nimh.nih.gov/health/statistics/suicide.shtml
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Risk factors for suicide
• Major physical illness
• Sense of isolation
• Hopelessness
• Job or financial loss
• Loss of relationships
• Lack of good health care
• Stigma with asking for help
• Easy access to lethal means
• History of trauma or abuse
• Previous suicide attempt
• Family history of suicide or knowing
others who died by suicide
http://67.media.tumblr.com/1b019e134c0785b4303066c8aeb6e751/tumblr_nqpvszbP7I1u5go9do1_500.gif
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Suicide Not Always Related to
Depression
•Many with chronic illness have no
mental health diagnosis1
•Response to suffering
•Mechanism to permanently relieve
distress2
•Life weariness3
•Negative treatment by healthcare
practitioners4 https://www.healthline.com/health/depression/talking-about-depression-at-work
1. Ahmedani, B. K., Peterson, E. L., Hu, Y., Rossom, R. C., Lynch, F., Lu, C. Y., . . . Simon, G. E. (2017). Major physical health conditions and risk of suicide. Am J Prev Med, 53(3), 308-315.
2. Alderson, S. L., Foy, R., Glidewell, L., McLintock, K., & House, A. (2012). How patients understand depression associated with chronic physical disease--a systematic review. BMC Fam Pract, 13, 41.
3. Newton-John, T. R. O. (2014). Negotiating the maze: Risk factors for suicidal behavior in chronic pain patients. Current Pain and Headache Reports, 18(9), 1-7.
4. Jason, L. A., Corradi, K., Gress, S., Williams, S., & Torres-Harding, S. (2006). Causes of death among patients with chronic fatigue syndrome. Health Care Women Int, 27(7), 615-626.
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Factors that Increase Suicide Risk
• Physical illness1
• Multiple physical illnesses2
• Chronic invisible illness3
• Functional disability4
• Chronic pain5
• Sleep disturbance6
http://images.wisegeek.com/bedridden-woman.jpg
1. Cheung, G., & Sundram, F. (2017). Understanding the progression from physical illness to suicidal behavior: A case study based on a newly developed conceptual model. Clin Gerontol, 40(2), 124-129.
2. Ahmedani, B. K., Peterson, E. L., Hu, Y., Rossom, R. C., Lynch, F., Lu, C. Y., . . . Simon, G. E. (2017). Major physical health conditions and risk of suicide. Am J Prev Med, 53(3), 308-315.
3. Pederson, C. L. (2018). The importance of screening for suicide risk in chronic invisible illness. Journal of Health Science & Education, 2(4), 1-5.
4. Fässberg, M. M., Cheung, G., Canetto, S. S., Erlangsen, A., Lapierre, S., Lindner, R., . . . Wærn, M. (2016). A systematic review of physical illness, functional disability, and suicidal behaviour among older
adults. Aging Ment Health, 20(2), 166-194.
5. Nicholas. 2011. Depression in people with pain: There is still work to do. Scandinavian Journal of Pain 2(2): 45-46.
6. Pederson, C. L., & Brook, J. B. (2017). Sleep disturbance linked to suicidal ideation in postural orthostatic tachycardia syndrome. Nat Sci Sleep, 9, 109-115.
Standing POTS®
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Increased Risk of Suicide in these
Chronic Illness Populations
• Increased risk of suicide documented
– Second leading cause of death in ME, CFS1
• 20% of ME, CFS patients die by suicide2
– 48% with POTS were at high risk for suicide3
– 33% with fibromyalgia experience suicidal
ideation4
– 4% with hypermobile EDS attempted suicide5
– 1,200 deaths by suicide chronic Lyme6
1. Jason, L. A., Corradi, K., Gress, S., Williams, S., & Torres-Harding, S. (2006). Causes of death among patients with chronic fatigue syndrome. Health Care Women Int, 27(7), 615-626.
2. Smith, W. R., Noonan, C., & Buchwald, D. (2006). Mortality in a cohort of chronically fatigued patients. Psychol Med, 36(9), 1301-1306.
3. Pederson, C. L., & Brook, J. B. (2017). Health-related quality of life and suicide risk in postural tachycardia syndrome. Clinical Autonomic Research, 27(2), 75-81.
4. Triñanes, Y., González-Villar, A., Gómez-Perretta, C., & Carrillo-de-la-Peña, M. T. (2015). Suicidality in chronic pain: predictors of suicidal ideation in fibromyalgia. Pain Pract, 15(4), 323-332.
5. Cederlöf, M., Larsson, H., Lichtenstein, P., Almqvist, C., Serlachius, E., & Ludvigsson, J. F. (2016). Nationwide population-based cohort study of psychiatric disorders in individuals with Ehlers-Danlos
syndrome or hypermobility syndrome and their siblings. BMC Psychiatry, 16, 207.
6. Bransfield, R. C. (2017). Suicide and Lyme and associated diseases. Neuropsychiatr Dis Treat, 13, 1575-1587.
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Warning Signs for Suicide
• Talking about
– Wanting to die
– Feeling trapped
– Feeling hopelessness
– Burdening others
– Unbearable pain
• Extreme mood swings
• Saying goodbye
• Giving away prized possessions
• Actively developing a plan
http://az616578.vo.msecnd.net/files/2016/06/04/636006642408487502-34369144_suicideeee.jpg
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Health Practitioners Can Help
Prevent Suicide
• Of those who attempt suicide
– 64% visited healthcare practitioner
in previous month
– 38% visited the previous week1
• Actively screen chronically ill
patients for suicidal thoughts
– Online questionnaires
– Ask during appointment
https://blog.medmee.org/the-relationship-between-health-care-
professionals-and-patients-consumers-varies-from-region-to-
b04391e6f5e6
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1. Ahmedani, B. K., Stewart, C., Simon, G. E., Lynch, F., Lu, C. Y., Waitzfelder, B. E., . . .
Williams, K. (2015). Racial/Ethnic differences in health care visits made before suicide
attempt across the United States. Med Care, 53(5), 430-435.

Prevent Suicide
• Give contact information for
national organizations
– National Suicide Prevention Lifeline
1-800-273-TALK
– Hopeline 741741 and text “start”
– National Alliance of Mental Illness in
your community
• Create a contact list of professionals
who understand chronic illness
– Social workers
– Counselors
– Religious leaders
– Suicide support groups Standing POTS®
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Healthcare Providers can Reduce
Suicide Risk Factors by Treating
•Chronic pain
–Medications
–Acupuncture/Massage
–Biofeedback
–Meditation
–Physical Therapy
–TENS Units
•Targeted therapy may
revolutionize pain treatment
https://www.everydayhealth.com/hs/psoriasis-treatment-management/treatment-overview/
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For more tips and tricks, visit
http://standinguptopots.org/treatment/pain

•Sleep disturbance
–10,000 lumen light in morning
–Sleep supplements
•Magnesium
•5-HTP
–Sleep medications
•Clonidine
•Klonopin/Xanax if anxious
–Meditation/relaxation techniques
–Limit stress/caffeine in evening
–Avoid exercise 3 hours before bed
http://mentalpod.com/archives/4773
For more tips and tricks, visit
http://standinguptopots.org/treatment/insomnia
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•Depression
–Exercise, if possible
–Medication
•Antidepressants can also help
chronic pain
–Tricyclics like Amitriptaline
–Serotonin norepinephrine reuptake
inhibitors like Cymbalta
–Psychotherapy with counselor
that understands chronic illness
–Electroconvulsive therapy
https://web.wellness-institute.org/blog/whats-the-best-way-to-treat-depression-
medication-psychotherapy-or-hypnotherapy
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Prevent Suicide
• Practice compassionate care
– BELIEVE patients when they talk about their illness
• Recent studies show physical anomalies for
– Myalgic encephalomyelitis, CFS1
– Lyme disease2
– POTS3
– LISTEN without judgment
– BE GENUINE in your concern
– INSTILL HOPE for the future
https://woundcareadvisor.com/compassionate-care-the-crucial-
difference-for-ostomy-patients_vol2-no5/
1. Loebel, M., Grabowski, P., Heidecke, H., Bauer, S., Hanitsch, L. G., Wittke, K., . . . Scheibenbogen, C. (2016). Antibodies to β adrenergic and muscarinic cholinergic receptors in patients
with Chronic Fatigue Syndrome. Brain Behavior and Immunity, 52, 32-39.
2. Strle, K., Sulka, K. B., Pianta, A., Crowley, J. T., Arvikar, S. L., Anselmo, A., . . . Steere, A. C. (2017). T-Helper 17 cell cytokine responses in Lyme disease correlate with Borrelia
burgdorferi antibodies during early infection and with autoantibodies late in the illness in patients with antibiotic-refractory Lyme arthritis. Clin Infect Dis, 64(7), 930-938.
3. Ruzieh, M., Batizy, L., Dasa, O., Oostra, C., & Grubb, B. (2017). The role of autoantibodies in the syndromes of orthostatic intolerance: a systematic review. Scand Cardiovasc J, 51(5),
243-247.
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Health Practitioners (and others) Can
Prevent Suicide
• Recommend online support groups
– Decrease isolation and hopelessness
• Promote counseling with someone
who understands chronic illness/pain
• Learn warning signs for suicide
• Encourage caregivers to
– Learn about specific chronic illness
– Guard their own health
– Find a support group
http://4.bp.blogspot.com/-_-
cBdSLVUG8/T3tChzIvNsI/AAAAAAAAANk/3bIEdnXF8fg/s1600/online-
support-network1-300x200.jpg
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Health Practitioners (and others)
Can Prevent Suicide
•Identifying suicidal thinking in
early stages gives time for
–Medications and other treatment
–Counseling
–Improving relationship dynamics
•Decreasing feelings of
burdensomeness
•Increasing socialization via text,
phone, or home visits
Standing POTS®
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https://listovative.com/top-10-reasons-why-socializing-is-very-
important/
Pederson, C. L. (2018). The importance of screening for suicide risk in chronic invisible illness. Journal
of Health Science & Education, 2(4), 1-5.

The Interpersonal Theory of
Suicide
•Perceived burdensomeness
–Feeling like a burden to family
and friends
–97% of POTS patients limited by
illness1
•30% need help with basic personal
care
•25% so disabled can’t work or attend
school
–Elevated in chronic pain patients2
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1. Pederson, C. L., & Brook, J. B. (2017). Health-related quality of life and suicide risk in postural
2. Kanzler, K. E., Bryan, C. J., McGeary, D. D., & Morrow, C. E. (2012). Suicidal ideation and
perceived burdensomeness in patients with chronic pain. Pain Practice, 12(8), 602-609.

Suicide
•Failed belongingness
–71% of POTS patients reported failed
belongingness
–76% reported high/very high levels of
loneliness
•Physical limitations
•Different life experiences
https://positivitypost.com/isolation-and-loneliness-pose-
dangerous-health-threat/
Standing POTS®
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tachycardia syndrome. Journal of Health Science & Education, 2(1), 1-8.
https://miamioh.edu/cas/academics/departments/psychology/

Suicide
•Perceived burdensomeness
–May be more important suicide
risk factor than
•Failed belongingness1, 2
– Feeling that you don’t belong in a
social group
•Loneliness1, 3
•Depression1
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1. Pederson, C. L., & Brookings, J. B. (2018). Suicide risk linked with perceived burdensomeness in postural tachycardia syndrome. Journal of Health Science & Education, 2(1), 1-8.
2. Zullo, L., Horton, S., Eaddy, M., King, J., Hughes, J., Diederich, A., . . . Stewart, S. (2017). Adolescent insomnia, suicide risk, and the interpersonal theory of suicide. Psychiatry Res, 257,
242-248.
3. Van Orden, K. A., Cukrowicz, K. C., Witte, T. K., & Joiner Jr., T. E. (2012). Thwarted belongingness and perceived burdensomeness: Construct validity and psychometric properties of the
Interpersonal Needs Questionnaire. Psychological Assessment, 24(1), 197-215.
http://www.klein-kraepelin.com/

How Can YOU Help?
•Believe them when they talk about
symptoms and suffering
–Don’t try to fix their illness
•Stay in contact
•Be understanding when plans get
canceled
•Plan fun activities in their home
•Take talk of suicide seriously
http://riverpodcast.com/church-family-healing-family-wounds/
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For more information, visit
http://standinguptopots.org/living
withpots/suicide-prevention

Questioning Suicidal Thinking
• Are you getting the best medical
care?
• Do you have someone you can
talk with about this?
• Do you have hope for the future?
• Are you lonely?
• Do you feel like a burden?
• Does thinking about suicide
provide you with comfort?
•Do you really want to die?
http://cdn2.momjunction.com/wp-content/uploads/2015/03/Teen-
Suicide.jpg
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Call to Action
• Educate others about chronic illnesses
– Looking fine ≠ feeling fine
• Consider suicide, even if not depressed
– Ask about suicidal thinking
– Decrease feelings of perceived
burdensomeness, failed belongingness,
loneliness
– Actively pursue treatments for sleep issues,
chronic pain, and depression
– Join a support group
• Be the one who listens and tries to
understand – you could save a life
http://medsin.org/public/images/diagram.png
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Chronic Invisible Illness and Suicide

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