When did these symptoms start?
How did you manage these symptoms when they occur?
Are you taking your medications as prescribed?
What are your diet and exercise regimens like?
What else was happening around you when you felt this way?
Can you please give me as many details as possible?
These and many other questions by doctors can make our heads spin. First we feel the swirl of information about the problem and the struggle to organize it all in the minutes we have to answer each question. Then there is an uncomfortable feeling in the pit of our stomachs and an irrefutable understanding that the problem has persisted longer than we wanted to admit. Whether it’s a case of the flu, a flare up of a chronic autoimmune problem, a complication of diabetes or high blood pressure, a psychiatric issue, or something new to you and potentially serious, the answers to these and more questions are important in the next steps of your healthcare and how you will manage your fluctuating experience of daily life.
On a scale of 1-10, how bad was the pain, mood disturbance, or sensory interference?
Do you even remember anymore? Sure, you will most likely remember the more severe events, but can you remember the degree of pain or discomfort of every single occurrence? Most of us cannot, and many of us try not to remember in order to get through the day, week, month, or year, and keep our attention on other areas of our life, such as work, family and friends, relationships, social activities, and planning for personal days and vacations whenever we can take them. These areas of life are affected whenever we are tired, overworked, chasing after other responsibilities, and especially when we are ill, and the things we manage on a daily basis tend to slow down or get shifted around in response to our internal state. Even differentiating our rankings along a 1-10 rating scale may have changed; are we really sure there is consistency of what we consider a level 1, level 2, level 3, and so on? Are we keeping consistent track of our own rating scale, as well as accurate details of our experiences along our scale?
What else was happening when these symptoms occurred? How have these issues impacted your life?
These questions bring into focus what we now understand about mental, emotional, spiritual, and physical health: our internal experiences affect our behaviors in our environment and everyone in it, and our environment and everyone in it affects our internal experiences and our behaviors. The biopsychosocial model (Engel, 1997) looks at a continuum of elements within a person (genetics, tissues, organs, nervous system) and external to the person (couplehood, family, community, culture, society). Each of these elements of our experience, and our identity, can grow and change with positive experiences as well as constrict and atrophy with negative ones. How we manage what is happening in our bodies and our environment to the best extent we can is vital to our mental, emotional, spiritual, and physical health.
Within the biopsychosocial model we have the opportunity to further explore whether our experiences are products of, or at least influenced by:
* Vertical stressors: Hereditary factors, generational teachings, secrets, and societal and familial
issues, etc. that trickle in from the outside and down the family lineage and
seep into the person’s inner world and present day experience.
* Horizontal stressors: Expected developmental changes that occur with age, any transitions,
and any unexpected events, etc. that happen in a person’s present day-to-
day life experience.
Both vertical stressors and horizontal stressors can affect our thoughts, feelings, and physical experiences of the health issue, as well as impact how we deal with it.
For those of us who have chronic health issues, these questions to explore our health also help us to organize our details in what aligns with a family-systems illness model (Rolland, 1984), and family adjustment and adaptation response (McCubbin & Patterson, 1982):
* Onset: This could be acute (abrupt onset, rapid progression, in need of urgent care) or gradual
(develops over time).
* Course: This could be progressive (the condition keeps worsening), constant (condition
stabilizes), or relapsing/episodic (alternating between stabilized and active flare ups).
* Outcome: This refers to the extent the problem shortens the natural lifespan.
* Family Adjustment and Adaptation Response: This refers to the family’s efforts to cope with
the illness, identify resources, and re-examine family member roles and family beliefs.
Over time, your detailed record of your own personal medical history and biopsychosocial experiences can help you to create an integrated and comprehensive archive of your symptoms, correlating experiences, and your coping skills, which you can revisit and refine as you manage your daily life and health care treatments. If you are a caregiver and are tracking these for an older family member or a young child, be sure to document details in their own words as much as possible to relay to the health care providers and avoid misinterpretations.
So how can we collect and organize all of this important information?
Make a Tracking Log
This involves using a daily planner- yes, a daily planner- to track any symptoms that come up along with whatever you already have in there about how you planned to spend the time in your day. A planner that has an hourly schedule would be ideal for this task, since it allows you to write down how you are feeling at various times during the day, what is happening inside and outside of your body at the same time, and what worked and didn’t work in your efforts to manage it.
For example, if you are working from 9am to 5pm (or a much longer day), and you are starting to feel nauseous at 11am, write that into your daily planner. You might start to notice if your symptoms are connected with an upcoming performance evaluation or an unsettling phone call as much as they are connected to your illness, and if the work stress or relationship stress (or both?) is contributing to your symptoms. In this case, avoiding the meeting or follow up call is not an option- sooner or later you will have to have that talk- and so you might start trying out various coping skills to manage your experience. You might try splashing some water on your skin, going out for a walk in the fresh air, grabbing your favorite seltzer drink to settle down your stomach, or talking with someone about your concerns in the hopes of getting some reassurance. Write down which ideas worked and which did not, and also track the time of when the symptoms started and when they subsided (start time and end time). If you notice that some of your efforts made the problem even worse, like feeling lightheaded and having difficulties breathing while you are out on that walk in the fresh air, make a note of that too and call your doctor.
If you are taking medications and you have had changes in your medications and dosages, tracking your physiological response patterns are especially important. Your notes will be important in your conversations with your health care providers and their recommendations for adjustments when necessary.
By the time you have your next doctor’s visit you will have documented enough information to assist your doctor in understanding what is going on, and what tests you may need. Keep your daily planner records handy, you will need them to create your medical history timeline.
Make a Medical History Timeline
Over time your symptoms may come and go, or be somewhat consistent. A medical history timeline is essentially a horizontal linear chart, sectioned into months, that summarizes your experiences, correlating events, and coping methods for each month. As you add more information to your medical timeline you may notice that there may be certain patterns developing that might help you predict what could be a difficult period and plan ahead accordingly.
One example would be allergy season; if you have allergies then you would be better able to prepare your activities and coping skills for those months every year. Another example would be difficulties that you notice are happening every few months or few years that are specific to your individual physiology and perhaps family history. Again, if you have a way to anticipate possible problem periods then you also have time to plan ahead to rearrange everything from your work schedule, child care activities and responsibilities, and daily personal regimens and rest periods.
Including an accurate medication history can also help you revisit with your health care provider which medications were helpful for you and which were not during your time of heightened difficulty. If you have changed your health insurance or health care provider over the years then your medical history timeline would be the fastest way to get your new doctor up to speed about what you may need.
Medical history timelines can also show you what activities correspond with your stable periods and inflammations, and may help you to adjust anything from your diet and sleep regimen to your daily activities in order to promote optimum health and stability.
Tips for Bringing It All Together
Whether you are using an app to track your data, typing up your logs on your computer, or writing it all by hand the old-fashioned way, keep these last two tips in mind:
* Bring clean and clearly written hard copy notes to the doctor’s office.
The last thing you need after all your efforts is to have problems with the internet connection as you are trying to access your notes. If you are bringing hand-written notes, make sure your writing is clear enough that you can read it and that the ink has not smudged any vital information.
* Keep all your hard copy notes, any medical test results, any related health insurance items, correspondences, and payment information in a binder, and in chronological order.
Use those five tab dividers to group information by year (ex: 2014, 2015, 2016, 2017, etc.) and clear sheet protectors to store items of different sizes, like old health insurance cards, copay receipts, and any letters or copies of bloodwork and x-rays you receive.
….and some final thoughts for today:
Illness, whether acute or gradual, often challenges every aspect of our daily life: what we eat, how well we sleep, our relationships, our ability to work and be productive, our responsibilities to significant others and family, our ability to have fun, and more. Working with a medical family therapist or a family therapist specializing in chronic illness issues can help you and your family members maintain some of the normal activities that you enjoy with the important people in your life while learning to better manage behaviors and attitudes that may be impacting your health, interpersonal connections, and daily living. Therapists may work with you to create a medical family genogram, which is a visual map of how illness has affected your family across the generations to better understand these legacies and their impact on your individual and family identity and narratives. This is particularly helpful if there are health issues on both maternal and paternal sides of your family, and if there are multiple health issues affecting you or your family members. Maintaining positive family rituals, like telling stories and playing games together, going on picnics or tours at gardens or zoos, going to the movies, and building things together, are some of the ways to strengthen and maintain family bonds and creating good feelings within yourself, and with each other, to cope with stresses related to illness.
If you or a loved one are dealing with any of these issues and would like to schedule an appointment with Lifespan Wellness Marriage and Family Therapy, please visit our webpage to learn more about our services and contact information. Reach out today!
- Gurman, A. S. Editor. (2008). Clinical handbook of couple therapy, 4th Guilford Press: New York, NY
- McDaniel, S. H., Doherty, W. & Hepworth, J. (2014). Medical family therapy and integrated care, 2nd American Psychological Association.
- Rolland, J. (2005). Cancer and the family: an integrative model. American Cancer Society, 3, 2584-2595.
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