Why it’s Important for People with Chronic Illness to Limit Stress and Set Boundaries (Free Healing Fact Sheet to Inform Friends, Family & Your Doctor)

I made today’s downloadable Healing Fact Sheet in response to a reader who asked if I could create a simple guide that she and others could give to friends, family, neighbors, landlords, lodgers, acquaintances and others.

Someone had recently disbelieved her and put her down when she had set a healthy boundary to support her body and her health, and she had felt despair.

As so many of us with chronic illness have experienced, this kind of emotional conflict and lack of understanding can be very stressful (and retraumatizing). It can also trigger flares.

With input and feedback from this reader who is dedicated to healing, I’ve created the “Healing Fact Sheet.” It aims to empower and help explain and validate the type of hard work she and others are doing with their chronic illnesses using trauma and nervous system perspectives.

One area that had recently been especially challenging for her involved how we sometimes have to set boundaries or limits that don’t seem to make sense to others. Yet they stem from the daily variations in energy levels, capacities and limits we have when living with chronic illness.

This fact sheet explains

• that symptoms vary daily for those of us with chronic illness
• why it helps to reduce stress
• why we sometimes have to set boundaries (and more)
• how it’s in the body and not psychological
• how it takes a lot of energy, effort, courage, perseverance and will power to walk this chronic illness path in ways that are typically invisible yet very real
• with extra validation from references

In addition to the list above, the Healing Fact Sheet can also help inform your doctor, other health professionals and more.

Get the Fact Sheet (It’s Free)

The Chronic Illness Healing Fact Sheet

Trauma & Stress Increase Risk for Disease & Can Trigger the Onset

• Common traumas include: abuse, emotional and physical neglect, loss of a parent in childhood ^{1 2}
• Condoned traumas include: discrimination (race, gender, sexual orientation…), inequality …³
• Global traumas include: the pandemic, racism, genocide, slavery, war, natural disasters ^{3 4 5}
• Under-recognized traumas include: bullying, losing parent to divorce, parental substance abuse ^{1 2}
• Exposures that can trigger disease include: infection, mold, toxins, physical/emotional stress or trauma ⁶

Effects of Trauma & Adversity are not “Psychological” ^{7 8}

The bodies of people with chronic illness are caught in biological states of fight, flight, freeze. This stems from past threat when there was too little support. Such survival states are no longer adaptive or helpful and increase sensitivity to stress even in the absence of stress or trauma today. Biological changes due to toxic stress and trauma are expressed in cells (cell danger response ⁶), gene function (epigenetics ^{9 10}), the brain (cortex thickness, neurons, & receptors ¹¹), telomeres (which shorten & decrease life span with stress ¹¹) and more.

Everyday Stressors Can Trigger Flare Ups ¹²

• Heightened sensitivity to stress in the present is a normal biological response to past adversity & stress
• Stress & reminders of past trauma can trigger disease and flare ups (smells, places, sounds, words, …) Other stressors & triggers can include: not being heard, seen, believed, respected, treated fairly; conflict in the household, job loss, surgery or other medical procedures, loss of a loved one, lack of health care, financial stress; being told there’s nothing you can do to heal, it’s in your head, you’re lazy; living with chronic illness; other people’s stress, unregulated emotions, advice, disbelief about symptoms / needs…
• Reducing stress takes courage, effort and perseverance. It cannot be done through will power alone.

Nervous System Experiences of Safety Support H.E.A.L.T.H. ^{13 14 15 16}

The sense of safety supports a body’s capacity to heal and reverse maladaptive defense responses. Healing trauma prevents, shortens, softens flares; slows worsening; stabilizes/reverses symptoms. It also takes effort. Avoiding all stress is not the end goal. Reducing conflict and more provides opportunities to heal, increases resilience to challenge, enables bodies to recover with more ease and trigger less easily. Actions are summarized with the acronym HEALTH and include:

• Home: Calm, nurturing space (Attuning relationships; Respect; Enough quiet, peace, support, choice…)
• Early: Addressing stress early & quickly can offer a window of opportunity to prevent a flare up
• Attention to self: ie diet, sleep, exercise; cancelling outings, meetings, etc, even last minute if needed
• Limits: Stopping if tired, not “pushing through,” adjusting plans if overwhelmed or triggered
• Thresholds: Boundaries, saying no when needed to events, others’ dysregulated negative emotions …
• Honoring the body’s needs: Needs change hourly in chronic illness ie: a person may be able to mow the lawn, go out to dinner or go horse-back riding one day and be unable the next or require days to recover

4 Readings on the Chronic Illness and Trauma Connection

1. Trauma      Blog Post: The Chronic Illness & Trauma Connection (Veronique Mead, MD, MA Family Physician, Somatic trauma therapist, Person healing from a disabling disease, Researcher)
2. Trauma      Book: The Deepest Well, Nadine Burke Harris, MD (Pediatrician, California Surgeon General)
3. Trauma      Book: When the Body Says No, Gabor Mate, MD (Family Physician, International Speaker)
4. Stress        Book: Childhood Disrupted (Donna Jackson Nakazawa. Science Journalist, Autoimmune Diseases)

3 Examples of What You Can Say & Do When Setting Limits

I’ve used the following types of phrases and inquiries in the past, especially during the times when my energy levels were low and I didn’t know how I’d be feeling on any given day:

1. “My energy levels (or “my body” or “my capacity”) is so different every day that I can’t tell until the last minute if I’ll be able to go with you, are you okay with that?”
2. “Would it be okay for you if I need to cancel at the last minute? I’d love to come but if cancelling makes it harder for you that’s okay, I just won’t schedule for now.”
3. When scheduling a conference or workshop I have asked the registration staff, without saying it’s due to chronic illness ,“I won’t know if I can come until right before this starts, is it an option to schedule or cancel last minute?”

• Note: these 3 examples are not in the fact sheet

The post “You Don’t Look Sick’: What to Say (and Not Say) to Someone With a Chronic Illness” on The Mighty has 12 helpful recommendations and tips.

Have a Recommendation? or a Request?

Let me know in a comment if there’s something should add to this fact sheet that might help make things easier for you, or if you have a request for something else that could help.

References

1. Felitti VJ, Anda RF, Nordenberg D, et al. Relationship of childhood abuse and household dysfunction to many of the leading causes of death in adults. The Adverse Childhood

2. Dube SR, Fairweather D, Pearson WS, et al. Cumulative childhood stress and autoimmune diseases in adults. Psychosom Med 2009;71(2):243-50.

3. Williams DR, Lawrence JA, Davis BA, et al. Understanding how discrimination can affect health. Health Serv Res 2019;54 Suppl 2:1374-88. doi: 10.1111/1475-6773.13222.

4. McFarlane AC, Van Hooff M. Impact of childhood exposure to a natural disaster on adult mental health: 20-year longitudinal follow-up study. Br J Psychiatry 2009;195(2):142-8. doi: 10.1192/bjp.bp.108.054270.

5. Yehuda R, Hoge CW, McFarlane AC, et al. Post-traumatic stress disorder. Nature Reviews Disease Primers 2015;October:150-57. doi: 10.1038/nrdp.2015.57.

6. Naviaux RK. Metabolic features of the cell danger response. Mitochondrion 2014;16:7-17. doi: 10.1016/j.mito.2013.08.006.

7. McFarlane AC. Post-traumatic stress disorder is a systemic illness, not a mental disorder: is Cartesian dualism dead? Med J Aust 2017;206(6):248-49.

8. Baldwin DV. Primitive mechanisms of trauma response: an evolutionary perspective on trauma-related disorders. Neurosci Biobehav Rev 2013;37(8):1549-66. doi: 10.1016/j.neubiorev.2013.06.004.

9. Weaver IC, Cervoni N, Champagne FA, et al. Epigenetic programming by maternal behavior. Nat Neurosci 2004;7(8):847-54. doi: 10.1038/nn1276.

10. Romens SE, McDonald J, Svaren J, et al. Associations between early life stress and gene methylation in children. Child Dev 2015;86(1):303-9. doi: 10.1111/cdev.12270.

11. Colich NL, Rosen ML, Williams ES, et al. Biological aging in childhood and adolescence following experiences of threat and deprivation: A systematic review and meta-analysis. Psychol Bull 2020 doi: 10.1037/bul0000270.

12. Mead V. 16 Clues About Trauma,Triggers & Flares in Chronic Illness: Chronic Illness Trauma Studies.com; 2019.

13. Levine P. In an Unspoken Voice: How the body releases trauma and restores goodness. Berkeley: North Atlantic 2010.

14. Scaer R. The trauma spectrum: Hidden wounds and human resiliency. New York: W.W. Norton 2005.

15. Merkes M. Mindfulness-based stress reduction for people with chronic diseases [Abstract]. Aust J Prim Health 2010;16(3):200-10. doi: 10.1071/PY09063.

16. Porges SW. Neuroception: a subconscious system for detecting threats and safety. Zero to Three 2004;May:19-24.