‘Poverty means having fewer choices’. A client had said this to me in session a few years back, and clearly, it stuck with me. As a talk therapist specializing in supporting folks impacted by chronic health challenges (Ehlers-Danlos Syndrome/EDS, Postural Orthostatic Tachycardia Syndrome/POTS, Mast Cell Activation Syndrome/MCAD, Immune-mediated disorders and associated co-morbidities), it was apparent then that this concept didn’t just apply to financial poverty. This scarcity of resources - be they financial, social, emotional, physical, developmental, educational or occupational, is affecting everyone in the country as we navigate the COVID-19 pandemic. For some folks, this may be their first encounter with unyielding limitations and losing one’s autonomy can bring about a plethora emotions and subsequent reactions. I write now, however, about the folks who have been in this position before; Perhaps not on such a large scale or in a way that is as relatable as a global pandemic and subsequent quarantine, but in more subtle stories that often go untold.
COVID-19 is a global health crisis and people living with chronic health challenges - our patients - are especially vulnerable to traumatic implications of the virus and the adaptations the virus necessitates. As we were initially encouraged to practice social distancing, forego trips outside the home, and increase hygiene practices, I noticed my clients were coping with these changes better than my immuno-typical family and friends. In fact, many of these folks have had medical necessity to live this way for some length of time previously and as such, they were pretty good at it! With the new changes recommending only ‘essential’ travel, contact, and services be maintained, the notion of what is ‘essential vs. non-essential’ is leaving chronically health challenged individuals feeling marginalized and conflicted. While being in isolation poses a mental health threat to all of us, the present decrease in access to home based caregiving, medical supplies, and uncertainty around the safety of accessing medical care, even if they are only temporary, feel like a direct threat to the survival of these individuals.
For me professionally, clients' exposure to this perceived threat to survival means that I have had to construct and/or execute Contracts for Safety and Safety Plans for several clients this past week. A safety plan is enacted when a client is assessed to be, or reporting to be a risk to themselves [or others]. If you’ll notice, I mentioned that I had to work with some folks to create these documents for the first time. This means that people who have been living without significant emotional dysfunction or distress are being destabilized by the implications of this pandemic. As such, it is imperative we keep in mind that the person we see in front of us today is just one iteration of who this person has been. Seldom are we privy to someone’s entire story, and as such, we have to keep our eyes, ears and hearts open to those seeking our care.
Often when we think about trauma, we think about an external force, circumstance or event as ‘qualifying’ for a traumatic event (ie. Car accident, war, robbery). However, folks who are living with chronic illness often have experiences, sometimes repeatedly, with “Exposure to […] threatened death, serious injury”. According to the diagnostic criteria for Post Traumatic Stress Disorder as outlined by the American Psychiatric Association in the DSM-V, an event with this exposure is considered ‘traumatic’. Consider, for example Mast Cell Activation Syndrome and anaphylaxis, cranio-cervical instability as a co-morbidity of Ehlers-Danlos Syndrome, and the prospect of contracting COVID-19 as an immunocompromised individual: Inability to breathe. Brainstem compression. Loss of life. Because they are considered symptoms or complications of these medical diagnoses (and that’s assuming these folks have had access to care and have been diagnosed appropriately), the significance of their impact - the trauma - is often overlooked.
We work hard to ensure we are connecting with our patients as people in our treatment of them, but when they come to us for care, there is a power dynamic inherent in our relationship. They trust that we will act in their best interest and that we have something to offer that they haven’t been able to access on their own. This is even more essential now: Trauma leaves us feeling powerless and as such, patients are looking for the hallmarks of the consistency, responsiveness and competency that you have offered previously. These tools have helped to support them in reaching some level of maintenance or sustainability giving them the ability to have agency and restoring trust in their autonomy. They need to know that we will still be here, that they are not in a free-fall, and that there will be a plan to support them in their own stability once again - even if that plan is not clear now.
I know we, as care providers and health professionals, are taxed in all of the ways right now. As people, we are subject to the same limitations, uncertainty and ‘fewer choices’ as our patients. And still, I’m asking you for more: We need to acknowledge that some of our patients carry complex trauma around their physical health and that they are being triggered by the implications of the COVID-19 outbreak. From there we can learn how to identify trauma responses in our patients, what we can do to help avoid the potential for re-traumatizing patients, and how we can take care of ourselves at this time. As always, I trust in our profound capacity for compassion, and also in our resiliency. I have included some information below to capitalize on these resources in order to help us and our patients as we navigate the COVID-19 pandemic together.
For Patient Care:
Address and Assess:
-Initiate and invite conversations about the ways the patient is coping with the COVID-19 pandemic
-Ask patients what their stress responses are.
- Do their current symptoms look similar?
- Make physical observations (in addition to the typical HR and BP metrics):
- Is this patient wide-eyed (deer-in-headlights look)?
- Are they engaging in self-soothing behaviors (stroking hair, humming, smoothing hands down clothing, rubbing/holding own hands)?
- Is this patient normally very chatty but unable to speak right now? Typically pretty reserved but speaking a mile a minute?
- Are they having a difficult time ‘tuning in’ or processing what you’re saying (eg. Asking you to repeat yourself, giving a blank stare)
- Are they scanning the room with their eyes?
Provide Support:
- Ask about your patient’s support system (Is there someone else at home with them? If not, how are they connecting with a friend or loved one?)
- Be warm in your words - speak slowly, softly and calmly
- Emphasize autonomy - While some medical facilities are still open, patients need to know all of their treatment options - even where risk of exposure to COVID-19 is involved.
- Help them perform a cost-benefit analysis weighing their personhood and best practices.
Communicate Continuity of Care:
Ethical Transparency - It’s okay to let patients know that there is not a plan at the moment while providing reassurance that a plan is in the works.
- How you will serve as a member of their care team during this time?(Are you still in office with accommodations? Telehealth?)
- How can they reach you? (Patient portal, Call the office, etc.)
Re-evaluate and Reinforce Treatment Plans:
- Have any medications changed?
- Does the patient have enough medication?
- What are their rescue medications/interventions?
- What are the circumstances/symptoms that necessitate use of this medication?
-**What are the symptoms/circumstances for which the patient should present in the ER?
- Do they require a specific protocol for this to ensure need-specific care? (Eg. Mast Cell or EDS protocol)
- Do they have this information?
- Are there extra/specific actions this patient could take to decrease risk of exposure to COVID-19 when presenting in the ER?
- Provide printouts or e-access to treatment plans when possible and appropriate
Calming Techniques:
- Diaphragmatic Breathing (for clients who are physically able to engage in this activity)
- Breathing with longer Exhalation (eg. Inhale for 4, exhale for 6)
- Square Breathing:
- Applying something cool [water bottle, frozen veggies, cool compress] to pressure points on the wrist, inside of ankles, base of neck
- 5-4-3-2-1 Grounding - https://www.urmc.rochester.edu/behavioral-health-partners/bhp-blog/april-2018/5-4-3-2-1-coping-technique-for-anxiety.aspx
-Some music has been shown to be relaxing:
- 'Weightless by Marconi Union’
Mental Health Resources
Disaster Distress Helpline
Text: TalkWithUs to 66746
Call:1-800-985-5990 (‘2’ for Spanish)
National Suicide Prevention Lifeline
Call: 800-273-TALK (8255)
Local Warmlines:
National Alliance for Mental Illness COVID-19 Specific resource list:
Self Care for Providers:
Is the COVID-19 outbreak triggering your own trauma?
- Are you startling easily at loud but ‘normal’ noises? (eg. Door closing?)
- Has your sleep been interrupted by nightmares?
- Are you avoiding certain places, objects or routines?
- Has it been more difficult to feel positive emotions?
- Have look in the mirror/take a selfie:
- Do you look like you?
- Wide eyed?
- Hunched shoulders?
- Clenched Jaw?
Evaluate Your Own Support system
- Who can relate to your experience right now?
- Who can provide you with comfort?
- To whom can you delegate some personal or professional tasks?
Examine Your Response to Need
- What is your emotional experience when a patient is presenting their need in a disorganized, frantic or demanding way?
- How does this influence your behavior with that patient?
- Does this affect the course of treatment?
- Do you have tools to mitigate the impact of these interactions?
Boundaries
Monitor - How much emotional, physical, logistical and intellectual ‘Bandwidth’ do you have at this time?
- Has it changed since yesterday?
- What tasks/circumstances predictably drain or replenish your resources?
Communicate - Manage expectations and protect your time up front by letting others know when you will not be accessible.
- Directly ask those around you for help, connection or space.
Honor - When possible structure your time so that you intersperse ‘replenishing’ activities into draining activities.
**Honor your personhood: You need rest. You need connection. You need to process. You need space.
Provider Resources/Ideas (Those mentioned above are also for us!):
Brief guided meditations and webinars - Now free for healthcare providers:
- Connect with associations specific to your professional licenses and population
Telehealth
Legislation allowing the use of specific non-HIPAA compliant platforms to provide telemedicine during the COVID-19 pandemic:
- HIPAA Compliant Telehealth Platforms:
Skype for Business / Microsoft Teams
Updox
Simplepractice
VSee
Zoom for Healthcare
Doxy.me
Google G Suite Hangouts Meet
Evisit
- Non-HIPAA compliant platforms that may be used at this time:
Apple FaceTime
Facebook Messenger video chat
Google Hangouts video
Skype
- Guide for Transitioning to Telemedicine During the COVID-19 Pandemic:
Streamline Communication and Patient Contact for Efficiency:
- If your patients typically contact you through your office phone, make this the starting point of communication and direct patients to places where they can get more generic information and updates from you.
- This allows you to give specific attention to patients who need your real-time responsiveness, maintaining their level of care and maximizing your resources.
For Your Website:
- Consider adding a COVID-19 update to explain how patients will receive care from you at this time
-You may want to include a COVID-19 population-specific FAQ
Social Media Page(s):
- Provide out of office information Additional Community Based Resources (eg. Community Buddies, Delivery from local businesses)
-Instagram for Business https://business.instagram.com/getting-started
- Facebook for Providers https://blog.evisit.com/create-facebook-page-medical-practice Patient Portal:
- Patients can access existing treatment protocols and records.
- Is this where they can make requests for medication refills and referrals?
E-mail/newsletters:
- A more private way of providing the same information to a specific audience
I do not endorse nor am I sponsored or compensated by any of the resources listed here. (I do use Simplepractice, Wix and Google Voice for my own practice and I’m happy to share any experience or insight I may have). This is intended to be a guide for providers as we navigate this experience. It is not exhaustive or comprehensive. Please continue to check with your local, state and federal licensing and governing boards for the most accurate, comprehensive and updated information.