You helped me with the Pilot HALE study more than 4 years ago. The updated Health and Adverse Life Events (HALE) Surveys focus on the under-recognized role of adversity in chronic illness and chronic health conditions. These new surveys now ask you to register as a way to better examine links between chronic conditions and dose of adversity.
Goals
An important goal for these surveys is to bring into awareness the kinds of events that can influence risk for chronic illness and other physical and mental health conditions. Knowing that many studies have identified adverse events as risk factors validates what so many of us know in our guts about how our own life experiences have affected our health. It also highlights the kinds of events that are typically overlooked and normalized, or seen as “not a big deal.”
When you add up these “not a big deal” kinds of events it turns out they can have an important impact on health and our lives over time.
This is about dose of adversity. My ultimate goal is to support healing through options: once we know about trauma, it offers us potent and often new or unexpected tools for healing.
Dose of Adversity
Each “no big deal” kind of event, and others that are more obviously traumatic, is a dose of adversity. In this and the other surveys I give each dose a point.
Surveys are inherently limited in what they can capture about our lives given the enormous complexity inherent in daily life. The challenge is to capture something useful without having to know and track “everything.” This is where dose comes in.
I’m designing these surveys to track the number of experiences at different times of life: babyhood, childhood, before onset of chronic conditions, and beyond. Each event in the different surveys adds to the dose of adversity and is given a point and sometimes multiple points. Each point is added to a score.
The concept of a score builds on the Adverse Childhood Experiences (ACE) score, which ranges from 0 to 10. The ACE studies have been in the forefront of showing us that the number of adverse experiences we have influences risk for health conditions later in life. Each additional ACE we’ve experienced increases risk.
Even though each ACE counts only as one point regardless of whether an event happened once or happened daily throughout our lives, this single point has been found to be a powerful indicator.
Dose of Adversity Offers Two Things
On the other side of adversity is what isn’t counted: our dose of positive, supportive, resourcing, protective experiences and people in our lives from childhood or babyhood – and now. This is the wild card. Rather than trying to include these events, I’m starting simply with doses of adversity.
This means that regardless of how high your dose of adversity may be it does not mean that you are destined to develop a chronic illness or other health condition.
On the other hand, if you do have a chronic health condition and you have a medium, high or even a low score / dose, it suggests two things.
- One – Being sick is not your fault, it’s about what happened to you.
- Two: Working with and healing old traumas may be valuable in your toolkit.
Understanding the role of trauma can help both with context that helps make sense of symptoms and flares, for pointing you in directions that may be helpful for living with chronic illness with greater ease and equanimity, as well as for healing.
Being Seen: The Close-to-800 List
Most of us with chronic conditions have had deeply hurtful experiences of being missed, disbelieved, and/or blamed by health professionals and others. These experiences are often familiar, and often evoking of experiences in childhood.
I’ve updated the searchable list to close to 800 chronic illnesses and conditions as a place to start when adding your chronic conditions to these life event surveys. I’m certain I don’t have everyone’s illness on this list, but I wanted to start with a solid base. I wanted to “go big or go home.” I wanted as many of you as possible who are taking these surveys to have one tiny drop of being seen just a little bit more by having your chronic condition on this list. Or at the very least of being able to tell me the name(s) of your condition(s) if it’s not on there so I can add it with each update.
Chronic Conditions Big and Small, Mental & Physical
This list includes physical and mental health conditions, cancer and symptoms or complaints. It also includes “Medically Unexplained Symptoms (“MUS”).” Please let me know if there’s something I should add.
If a condition or complaint has lasted more than a year and is a concern or an issue in your life, consider adding it to the list in this survey.
The Close-to-800 List contains a wide range of chronic illnesses. This includes autoimmune diseases such as type 1 diabetes, Rheumatoid arthritis that is seronegative or seropositive, and Lupus; Chronic Fatigue (ME/CFS), and medically unexplained symptoms (MUS); type 2 diabetes, High blood pressure, pre-diabetes and other conditions linked to insulin resistance; as well as pain, side effects due to radiation, chemo or meds; sleep apnea and sleep issues; fibroids, menopausal symptoms and osteoporosis; prostatitis; heart disease; vertigo; vitiligo; as well as complaints such as larger body weight and smaller body weight.
The Trauma Lens While Working on Surveys
I’ve spent the over 4 months concretizing my vision for these surveys. I’ve been thinking about them for over a decade. As I mentioned in the Surveys Coming Soon! post, it’s been fascinating to witness how this process of mobilizing into something I am passionate about has also been a trigger for survival patterns of fatigue and freeze in my system. There’s nothing like taking up more of your own Space in Life, and going for what you want, to potentially stimulate danger signals in parts of you that have learned it is safest to stay small(er).
I’ve had an amazing amount of juice and joy in the creative side of this endeavor. I’ve seen how periods of fatigue could quickly shift into energizer-bunny problem-solving cycles or staying up until midnight creating images that light me up. And then not paying for it the next day. Wonders never cease. This greater flexibility in my system, with the ability to shift more easily, is an indication of a good direction in the healing journey. The trauma lens continues to expand my views, my life and my joy in between all the harder dips into “opportunities for practice.”
It’s New and Evolving
I look forward to learning about your experiences with these life event surveys. Taking the surveys this far and seeing where I can take them is a new process for me. I’m learning as I go. Your input will help me and the surveys evolve. You will receive a score for most surveys that is based on dose of adversity the surveys ask about. After completing the Background survey below you’ll land on a confirmation page with graphs of results and content that puts your score in context as best I understand it now. You’ll get a short summary in an email confirmation and a detailed PDF Report that you can download. Your input – about any and everything from content, to getting a score, to how it feels to take them – will inform this process.
Add Your Health Conditions: The Health Conditions Survey
The Health Conditions Survey is a cornerstone survey. It is the place to list the state of your health whether you are in good health or have chronic conditions. Adding your state of health serves as the core data around which to assess the roles of adversity.
Including your state of health helps with all kinds of questions. Is adversity more common in mental health conditions than physical health conditions, for example? Are adverse events really a core factor in all health conditions? Are certain types of adverse experiences more common in some diseases, such as babyhood events being involved in risk for diseases of insulin resistance? Are similar events risk factors for most diseases such as autoimmune diseases?
Add any health conditions from the close-to-800 list below.
All Surveys:
The new HALE surveys look at specific categories of adversity such as in childhood (ACEs, ACEsPlus, Multigenerational ACEs), and babyhood (ABEs). There are more to come, such as the adverse pre-onset experiences (APOEs).
- The Health Conditions Survey – formerly the Background Survey
- The original 10 ACE Survey (Adverse Childhood Experiences)
- Additional ACEs in the ACEs Plus (ACEs+) Survey
- Developmental trauma in childhood in the ACREs Survey
- What is Helping on Your Healing Journey Survey?
- See all surveys here
I look forward to your responses and comments. I read each of your surveys and responses with curiosity – and your stories often evoke a sense of humility for all that you’ve been through and for your willingness to share. Thank you.
Leave a Comment