Start by writing an inventory of your current physical and emotional symptoms. Many of us may not even be aware that we suffer from minor or major aches, pains, and distress so ingrained is our self-neglect. Bring awareness as to how you really feel. This is the first step to improved health and happiness, which, by the way, go hand in hand. Next, decide what you need to address most in this list. For example, poor sleep is a very important symptom that needs a bit of extra consideration. It can lead to emotional dysregulation, poor distress tolerance, accidents, and decreased immune function. Attend to that symptom immediately!
Next, once you have your list of emotional, psychological, and physical discomforts, its time to start creating your healing community of health providers/friends/community classes. Invite your “community members” gradually – taken in small steps as your time and money allows you. You may only need to connect with one or two types of providers, however, human beings are complicated and “it takes a village” idea does NOT just apply to children.
For example: for sleep concerns, you may want to consult your primary care physician for medication or supplement ideas. Set up a physical therapy evaluation or personal trainer appointment to safely improve fitness which offers many emotional and physical health benefits (including improved sleep). Community/online classes in yoga/meditation are often refreshing. If your budget allows, a massage therapists, and nutritionists may all be part of your new healing community. Other healing providers include; biofeedback therapists, naturopaths, wellness coaches, aromatherapy experts, and chiropractors.
Consider seeing a psychologist for yourself or as a family. Join or create a support group of two or more people. This may offer a great starting point to work through the painful feelings often associated with caring for a child with PANDAS/PANS. Talking things out helps work through the trauma of illness. Working with a marriage counselor may also be useful. Chronic illness is hard on marriages.
Why is it difficult for us to engage in these wellness practices? Let’s consider several difficult barriers to creating and accessing a healing community. Often as parents we continually choose to ignore our own suffering, putting ourselves on the very bottom of a packed priority list.
One profound barrier to creating healing communities is our stigma regarding needing help. Our values tend to drive our priorities. Priorities are what we deem as important on which to spend our time and resources. A peoples’ values tend to be created by the culture in which they are raised. For instance, historically, strong American values include individuation and staunch independence. These are not necessarily bad values, however, when strictly adhered to they can lead to social alienation, loneliness, anxiety and depression. This is especially true under stressful times.
Imagine the Lone Ranger doing all his Lone Ranger jobs, but also trying to handle a kid in a PANDAS/PANS flare. Not a pretty picture. After serving as a holistic clinical psychologist for nearly 20 years, being a two-time cancer survivor, and parenting two children with PANDAS/PANS, I continue to be surprised and saddened by the lack of self-care many adults demonstrate. My community partners helped me heal despite difficult times.
Our biology dictates that we are interdependent beings. We need each other. I am a good psychologist, but a terrible carpenter, pianist, and accountant. We each have our gifts, strengths, and weaknesses, meaning we need each other to fill in where our own skill sets might be lacking. It is time we bust through this magical belief that we can handle it all and give ourselves the holiday gift of a lifetime by asking and accepting, without shame, the help we need. Life takes courage. Building a healthy, happy life takes everything!
Another barrier to creating a healing community is time—how can we find more of it? We may misuse our valuable time. Think about how many of our interactions are based on social media. We no longer take the time to meet our friends for an hour lunch or coffee, taking the time to develop and utilize a wellness team can seem frivolous and indulgent. Or, we are “overly productive.” Today it seems that the person with the most crammed schedule wins! But the prizes appear to be high blood pressure, obesity, heart disease, anxiety, depression, isolation, and exhaustion. No thanks.
We would probably all be more effective if we carved out time for self-care.Finding time requires creativity and teamwork. This is especially true during holiday time when demands seem to multiply. I know some of your children may be suffering from severe separation anxiety so there will be times escaping them is very difficult. When this occurs, don’t surrender!! Offer to kid swap with neighbors, friends, family, spouse for a few hours monthly, or heaven forbid, weekly. Use this time to visit your healing provider of choice. You could ask your therapist for a few minute phone call instead of an hour session, try and grab a 10-15 minute power walk with a neighbor or pet, or even deep breathe for 10 minutes with your eyes closed. Stay determined in your quest for improved self-care! I encourage you to be mindful this holiday season and spend your time wisely.
Money! where will you find the extra money for all these providers? You have courageously acknowledged the need for help, you have taken an accounting of your needs, you have carved out a bit of time on an ongoing basis for self-care appointments, but Financial concerns can be another barrier in accessing a wellness team. Let’s look at some options!
First, if you have health insurance, you can usually start with your primary medical care provider covered under your plan. I want to make this point very loud and clear–IF YOU DO NOT LIKE YOUR PROVIDER, DO NOT FEEL UNDERSTOOD AND/OR HEARD, SWITCH DOCTORS! You are the consumer, I strongly encourage you to shop for the right primary care provider, there are more then enough from which to choose. And yes, this may take time, but is worth it in the long run.
Now that you found your trusted primary care doctor, discuss your wellness plan and ask for referrals to other in-network providers. Inquire about a sliding fee schedule that could work, reduce frequency of healing services to monthly or quarterly (the idea is some is better then none).
Look in your community bulletin for less expensive offerings. Think about trying one class of yoga, meditation, tai chi, or aromatherapy classes. Look for free PANDAS/PANS support groups or other types of support group in your area, or better yet, start one. Check with your church or synagogue for mental health services. Ask for wellness services for your holiday and birthday gifts from those who usually give. Lastly, meet your neighbors and find out if anyone would barter services. You never really know until you ask! Lastly, do not give up!
As we face this holiday season which is now upon us, maybe the PANDAS/PANS flare is raging or we are awaiting it in distressed anticipation, and expectations are being hurled. Or maybe you have never recovered from the past illness. No wonder many of us are not feeling our best. In retrospect, we may have not been feeling our best for many and many holiday seasons.
Armed as we are with knowledge, understanding, and permission to begin our journey towards improved health and wellness— it is time to break through personal barriers. And, let’s allow ourselves to create and enjoy our unique community of healing and give ourselves the greatest gift there is:
Improved health and wellness in the face of PANDAS/PANS chaos! May you and your family have a happy, healthy holiday!