Chronic Illness and Trauma Survey Results: Part 1 of the HALE Pilot Study (Summary & 56 Conditions)

I created the Health and Adverse Life Events (HALE) questionnaire, a Chronic Illness and Trauma Survey, in July 2017. It was a small pilot study to assess if those of you with chronic illness experienced more adversity or trauma in comparison with those of you in good health.

I wondered whether your personal experiences were similar to the research I present on this blog.

 202 of you took the survey.

186 of you had one or more chronic physical or mental health conditions

16 of you were in good health.

This was enough to get significant results.

This first post presents a short summary of what was found and a list of the most common chronic physical and mental health conditions. I’ll share more soon.

I have links to tools and resources that support healing at the bottom of this post.

You can download the post with the full list of all 56 conditions for free below (the forms will appear momentarily).

The Chronic Illness and Trauma Survey

I was deeply moved to learn that more than half of respondents had a chronic condition for more than 20 years or for most of your lives.

In addition, almost 90% of you had been living with a chronic health condition for more than 5 years.

Your willingness to keep working at your health, to keep supporting research like this pilot survey, and to keep searching for answers made me want to cry and cheer at the same time.

You defy the norms that are so often associated with people who have a chronic condition because of your sheer dedication, effort, persistence, open-heartedness and willingness to find something that works and to help others who are searching for answers too.

You also left amazing, detailed, poignant comments that sometimes made tears run down my cheeks as I learned what you’d been through and what you’d done to survive and heal. I’ll share some of your comments in future posts.

Summary of Survey Results

I created the survey with input in research design from Marjorie Jannotta, Ph.D., and have analyzed the results with Nikki Godfrey, M.S., a statistician. I will tell you which results were statistically significant and otherwise compelling in future posts.

The HALE pilot study found that people with a chronic physical or mental health condition experienced more adversity:

1. in childhood (“ACEs” and ACEs plus were statistically significant risk factors)
2. in childhood relationship experiences with caregivers (ACREs were statistically significant risk factors)
3. since turning 18 years of age (adverse life experiences or “ALEs” were statistically significant risk factors)
4. had a younger age of onset of chronic physical or emotional health problems with higher adversity scores

Limitations

• Age was somewhat different between groups
• While many responders knew of the connection between trauma and chronic illness almost 50% did not
• Knowing about trauma can influence whether we recognize trauma in our own histories and chances of under-reporting in response to questions
• Although I draw no hard conclusions from this pilot study, results are consistent with large and diverse studies
• While many responders knew of the connection between trauma and chronic illness almost 50% did not
• I draw no hard conclusions from this pilot study, however results are consistent with large and diverse studies
• It was unclear if adversity in babyhood or “ABEs” were different between groups
• It was unclear if adverse multigenerational events or “AMEs” were different between groups
• I had not yet created categories for onset triggers (APOEs) or for racism and discrimination (AIEs) and will do so in future surveys

This pilot could not assess results by specific type of illness in part due to the smaller number of responses and in part because it could not track that level of detail, which would require a survey with a log in.

45 Physical Health Conditions

186 of you had one or more chronic health conditions. Among you there were 45 different types of chronic physical health conditions. The question in the survey did not require that the condition be diagnosed by a doctor.

The survey question asked for any physical condition, including cancer, lasting more than 3 months. As mentioned earlier, 90% of you had been living with a chronic condition for more than 5 years.

The most common chronic physical conditions were as follows:

1. Pain
2. ME/CFS (chronic fatigue syndrome)
3. Food sensitivities
4. IBS (irritable bowel syndrome)
5. Autoimmune disease
6. Blood Pressure (high or low)
7. Fibromyalgia
8. Mold sensitivity
9. Thyroid (high or low)
10. Osteoarthritis
11. Skin-related
12. Gynecological
13. Obesity
14. Asthma

Graph: Most Common Physical Conditions

The bars represent the percent of respondents with each condition (186).

Chronic Pain

I was shocked to see that the most common of all physical conditions was chronic pain, which was the third most common of all conditions after anxiety and depression.

Almost 50% of you experienced chronic pain for at least 3 months. Some of you very likely had what is referred to as “high impact pain.”

Almost 11 million U.S. adults have “High Impact Chronic Pain.” That is, pain that has lasted 3 months or longer and is accompanied by at least one major activity restriction, such as being unable to work outside the home, go to school, or do household chores (CDC, 2016)

The survey results for pain were 2 to 6 times higher than the average found here in the US,  “where about “20.4% of U.S. adults (50.0 million) have chronic pain and 8.0% of U.S. adults (19.6 million) have high-impact chronic pain.” These statistics come from the CDC (2016 data).

Common Chronic Illnesses

All of the universally most common conditions were represented by responders to this chronic illness and trauma survey. The most common types of chronic illnesses in HALE survey responders, however, were quite different from the most common chronic illnesses in the USA and around the world. These include:

1. Heart Disease
2. Cancer
3. Chronic Lung Disease (such as chronic obstructive pulmonary disease or “COPD”)
4. Stroke
5. Alzheimer’s
6. Diabetes
7. Kidney Disease

The differences in the list of diseases may be due in large part to the fact that I’ve written about the diagnoses that are most common in the HALE survey on my blog. I may therefore have attracted more of you to this survey who have these illnesses.

Some of my blog posts include the science and my personal experiences with ME/CFS (chronic fatigue syndrome), food intolerances and IBS. Some posts share the science trauma in autoimmune diseases and asthma.

Other Chronic Physical Conditions

Responders also had the following chronic conditions, among others:

• Diabetes, type 1
• Diabetes, type 2
• Dysautonomia
• EDS (ehlers danlos syndrome)
• HIV/AIDS
• IBD (inflammatory bowel disease)
• Lupus
• MCAS
• MS
• Parkinson’s
• POTS (postural orthostatic tachycardia syndrome)
• RA (rheumatoid arthritis / rheumatoid disease)
• Sjogren’s
• Sydenham’s chorea

11 Mental Health Conditions

82 or 46.6% of you had at least one chronic condition related to mental health. The question did not require that the condition be diagnosed by a doctor.

The survey question asked for any mental health condition lasting more than 3 months (90% of you had lived with a chronic condition for more than 5 years).

1. Anxiety
2. Depression
3. PTSD
4. Panic attacks
5. Addiction (to work, exercise, food, substances or other)
6. Eating disorder
7. ADD/ADHD
8. OCD
9. Bipolar
10. Complex PTSD (also known as adverse childhood relationship experiences or “ACRES”)
11. Anorexia / far underweight

Graph: Mental Health Conditions

The bars represent the percent of respondents with each condition (186).

This is similar to the list of most common mental health conditions in the US although none of the respondents listed autism or being on the spectrum.

Anxiety and depression are among the two most mental health conditions in the US and around the world.

Anxiety and depression are also among the two most common and well-known long-term effects of trauma.

Many of you had a chronic physical illness and a chronic mental health condition. This is very common. The science suggests that it’s because trauma is a risk factor for both mental and physical health conditions rather than the long-held view that mental illness such as depression causes chronic illness.

You are Not Alone

These results are another indication that you are not alone. That having a chronic illness is not your fault.

They support what I share on this blog, which is that chronic conditions appear to represent effects of trauma rather than being purely psychological or purely genetic.

These findings offer hope and encouragement because they provide more choices and control than we typically realize and that doctors and other health professionals know about.

Tools for Healing and Hope

This Chronic Illness and Trauma Survey suggests, like other studies I share on my blog, that there are things you can do to heal. These include healing trauma and its effects. This is true both for chronic physical illness and mental health conditions.

The list below provides examples of what you can do to make a difference with symptoms.

This includes using these tools and approaches now, during periods of increased stress, such as is happening during the pandemic and with other events.

Learn more in these posts:

11 Tools that Support Healing (My Favorite tools, recently updated for Covid)

Resourcing Posts and the Little Things that Support Healing

Therapies for Healing the Effects of Trauma

Summary of How Trauma Affects Health

Other Results to Come in this Series

• ACEs and ACEs plus (adverse childhood experiences)
• ACREs (adverse childhood relationship experiences)
• ALEs adverse life experiences after 18th birthday)
• Is chronic illness traumatizing? and some of your comments
• and more

Get the full list of physical and mental conditions in the free download of this post (the form will appear momentarily).