
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
- Trauma Blog Post: The Chronic Illness & Trauma Connection (Veronique Mead, MD, MA Family Physician, Somatic trauma therapist, Person healing from a disabling disease, Researcher)
- Trauma Book: The Deepest Well, Nadine Burke Harris, MD (Pediatrician, California Surgeon General)
- Trauma Book: When the Body Says No, Gabor Mate, MD (Family Physician, International Speaker)
- 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:
- “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?”
- “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.”
- 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.
Hi Veronique,
Thank you for the download. I clicked on the pdf but it doesn’t seem to be downloading on my tablet. I dont know if the problem is at my end or yours ?
Hi Laura,
Thanks for letting me know – I’ve just checked and it seems to be working fine on my end so I’m not sure what might be going on. Hmmmmmm. I will ponder it and see what else I may hear from others. In the meantime, I have emailed you a copy of the pdf.
Veronique, I don’t know if I’m the reader you referred to or if another reader wrote to you with a similar request, but either way, this factsheet met a very deep need in me, for understanding and being seen. On a practical level, I will find it really helpful to have a few printed copies of these, when I need to protect myself from others’ dysregulated emotions or their demands and expectations, and when I don’t have the capacity to explain it all to them. One thing that I have found helpful for myself when setting boundaries is to explain to people that ‘this is neurological, not emotional’. Yes, I can appear to be emotional when I am in overwhelm, but this is due to distress at sensory overload and the stress of sensory and verbal processing – not the same as having an emotional reaction to what the other person said or did. Thank you from the bottom of my heart for creating these resources to help us to heal.
Hi Kirsten,
It was YOU that made this most articulate and important request :-). You are “The Reader” (I emailed you a few weeks ago but didn’t get a response so maybe it went to your spam). I’m so glad that this fact sheet met such a deep place and serves such a vital purpose. And I love your phrase “neurological, not emotional.” So accurate. And a term that is clear, respected,” efficient, articulate and says it all. Wonderful to hear from you and thanks again for having helped me to create something like this! xoxox
Thank you so much for this healing and important information! Setting boundaries (still a work in progress) is one of the most important (and difficult) things I have and am still learning to do after living with fibromyalgia for 23 years. Thank you for sharing this, I have shared as well.
Hi Jeannah,
I’m so glad this feels helpful. I am still working on boundaries too – sometimes it’s with people closer within our circle or family and that can make it less clear (among so many other challenges!) Wishing you well on this journey!!
Thanks so much Dr. Mead! It is extremely helpful! and so important for our physical and mental wellness.
Veronique, Thank you for the practical tools you provide us all. This fact sheet brought tears to my eyes as I read it. Boundaries work is surely a work in progress for me! I am going to keep copies of this at the ready for distribution as needed. So few people truly understand what the realities of life are like and this beautifully prepared source sheet will save me energy when I don’t have any to spare and reduce an exacerbation of upset when I struggle because of what is going on with me interiorly to put into words for the exterior world. This sheet will bring visibility to me at those times when I feel utterly invisible and unheard and at a loss to shift a troubling encounter. This will ultimately usher in feelings of calmness and comfort, even freedom to be me, unabashedly in my experience in the moment. I am confident it will provide a shift for me and the recipient. I am so grateful. Thank you! Pam
Hi Pam,
Wow – this really moved you. I”m so glad and you are so welcome!
Here’s to saving you and others energy with this huge and vital task! Instead of location, location, location, it’s Boundaries, Boundaries, Boundaries lol. So happy it feels like such an energy saver and supporting your visibility and being more fully YOU.
That is a terrific quote in your second comment. I have Gabor Mate’s documentary on my watchlist – he is such a role model!! xoxo
Your source sheet aids the work of Dr. Gabor Mate of allowing us to live in a “Trauma-Informed World.” Zaya and Maurizio Benazzo of SAND – Science and Nonduality write:
“We hold the vision of a world that breaks free of cycles of trauma and becomes more open and inclusive. It all starts with us, truly. It starts when we allow our wounds to
teach us about listening, self-love and compassion and to remind us of the preciousness of life. Then truth opens our hearts and our innate wisdom begins to shine through our wounds.”
Folks can visit this link to see the movie on trauma coming out the week of June 8th:
https://wisdomoftrauma.com/
Hi V
just a quick note, I haven’t had time to read this, my 89yo mother is seriously ill and I’m trying to care for her while under the influence of prednisone (a special kind of stress) and having a lupus flare. I just wanted to say these past few months I have decided that self-reg + healthy boundaries is a “cocktail” that is essential for me even surviving all this stress and some days I feel like I’m doing (we’re doing as a family) extraordinaryily well. Add to that what I have learned from Pema about… well everything and I feel like I at least have a compass and a map whenever the terrain is rough (or smooth). Also rememering some things you taught me. Looking forward to reading.
Hugs
Penny
not sure cocktail” is the right metaphor lol.
Hi Penny,
I’m so sorry to hear about your grandmother and all the other STUFF going on simultaneously in your life. AND I couldn’t agree more about how helpful it is having this …. cocktail (so many layers and threads of support) / context / set of tools… I feel the same way, even when I’m having more symptoms sometimes too (like more fatigue during the pandemic and with getting the vaccine etc). Here’s to our COMPASS AND MAP and all the things we keep learning. YES! and big hugs right back xoxo
Veronique, as ever your resources are wonderful and so helpful. Reducing stress certainly does take effort and courage although it may not appear so to others. As a friend recently commented, ” It is great that you can lie in bed and meditate all day.” Being bedbound in itself is a stressor, worrying about the future, deterioration etc.
It does help to understand the science. Cell Danger Response was a huge lightbulb for me. I would love you to write about some of the more unusual symptoms that many people do experience. For me these are MCAS, visual disturbances, left sided symptoms, emotional lability and really intense physical anxiety which seems unrelated to anything. Also how to stabalise or find a baseline when bedbound.
Thank you so much for all you give.
Warmly,
Elaine
Hi Elaine,
Thanks so much for writing. Yes indeed – being bedbound or having to be “horizontal” (as I called it) carries its own Burden in so many forms. I will ponder your invitation to write about some of these other and unusual symptoms. I have some of these but not all, although I do have left sided symptoms – what are your thoughts on that one?? Glad the CDR has been such a big lightbulb for you too!!
Hi, I entered my email but I’m not getting the sheet.
HI Gail, So sorry about it not functioning. I have emailed you the pdf and made an update to the page so it now appears to be working. Thanks for letting me know!