If you belong to a POTS group that deletes your positive posts take that as a sign and delete your access to the group. Social media plays a large roll in your day, environment and overall road to recovery. Choose wisely.
Disclaimer: Fare warning, I just got back from a camping trip, so my mind is FRESH from a three day phone free get away. Enjoy your read.
Environment
The POTS Strong Method teaches that environment is everything. This is far past air quality. I am talking of the POTS stuff, temperature control, noise, volume, stimulation, time , rest quality, activity, any and all stimuli even social media. Have you ever thought of social media as part of your environment? Most importantly how it effects your wellness or success in recovery?
Lets factor in the topic of screen time. Did you know your phone can average the amount of time you spend staring at it? I was working remotely in January of this year and was surprised to see a notification come through that I had spent a total of 2 hours a day with it in my hand. It’s easy to do. We get lost in our thoughts, work or play and end up buying headphones because they were on sale on Amazon when really all we sat down to do was check the weather.
We are told to be aware. Schools and children’s clinics encourage to limit access. But, here we are, looking at our screen for two hours a day. I want to know why. What are we looking for? What is it that keeps our interest. Then it hit me. It’s the obvious content quality, or lack there of.
It’s not my business to know what you spend your time researching, searching, reading, liking or viewing etc. But as a Wellness Coach I know the power of our environment. It can make or break success rates in health/wellness goals by encouraging misleading thought processes, creating self doubt or simply wasting time. For the POTS community it is my personal and professional opinion that that although many POTS groups have good intentions, in the end keep individuals from healing.
My Experience
Would you be surprised to hear that I did not belong to one support group when I was healing at age 15? Not one. When I was 15 the main social networking website was MySpace. Facebook wasn’t too popular yet, Instagram hadn’t been developed yet. After my visit to Mayo Clinic the medical staff encouraged me to seek support with first and foremost my loved ones, community and if needed social media to chat with others who also had POTS. So I added a group or two, read through and even talked to another POTS teenager like myself on the phone.
It was depressing.
I opted out.
The positive bubble I lived in allowed me to maintain focus in recovering. I was able to experience, feel and and adjust to symptoms accordingly. Recognizing them for what they were not for what they could be, may be etc. When I needed professional advice, I spoke to my medical team. I gained the clarity or next step that I needed and continued to travel down the road of life.
After meeting my POTS student in 2018 curiosity got the best of me as I began to search for POTS support groups on Facebook. I even took the steps as part of the screening process by answering the three questions and watched as my membership status was marked as waiting approval. Once I received notification that my membership had been granted I scrolled through finding majority of posts to be based around questions.
It was scary.
- Who can read my ECG?
- Is my ECG normal?
- Should I take my beta blocker?
- I am feeling xyz is this normal?
- Should I go to the ER?
When viewing these posts I read them, my brain processed the words but what I gathered was desperation. These individuals were in need of help. They did not have or feel they had the support they needed. They were seeking content quality in the wrong place.
Shocking
Taking this a step further, I was shocked to find that my posts and even posts from my clients raising awareness for non-pharmacological modes of treatment to be deleted. Admins were actively viewing modes of treatment that can be of aid in addition to pharmacological based treatment as poor content. By deleting they stripped their members access to scientific based knowledge that they may not have known to search for or success stories that could be the inspiration they need to take that next step, and they will no never read.
I understand admins thoughts on subjecting their members to feelings of being misunderstood or being exposed to content that is intimidating. It is my strongest wish as a professional that admins that feel this way would rethink the power they have in the groups environment. Just as an individual may feel incapable of mindfulness, or have no interest in this time for lower limb supine exercise, they will scroll by but the hopes is it will plant a seed for future attempts overall bettering their wellness. Why is it up to the admin to decide what the members need.
Control
Remember, you are in control. You have more power then you think you do. Use it. It is just as easy as you sitting down at the end of the day. Choosing to view your Netflix account. Think you’ll try a new series, 5 min in decide it’s not worth your time or it simply doesn’t fit your mood so you click back and scroll for something new.
The SAME applies to the POTS Community.
If you are reading this blog post it is a given that you are on social media and you no doubt belong to a handful of POTS groups. I want you to think about the last time you scrolled through your groups content and read a post or two.
- Did you feel hopeful ?
- Did you find relative and science based information to aid you on your journey?
- Did you learn tips or tricks that fit your day immediatly?
- Did you feel fear?
- Did you become anxious?
- Did you feel you experienced a rise in POTS flares or symptoms?
Proposition
Think of how many posts you read centralized around the topics:
- I’m in need of support
- I need to vent
- Express feelings of being scared
- Tried xyz and passed out
- Developed a new rash that POTS caused etc.
Whether these are valid statements or not, do you think filling your mind with these statements is helping or clouding your focus on your personal recovery?
I vote clouding.
I am not stating that these topics aren’t valid. They are. At one point or another each POTS individual has experienced one or all of these topics I listed above. They are very real, scary and can be debilitating. That’s why I believe so passionately and encourage individuals to think of their environment quality.
Reconsider your membership to POTS groups that offer a toxic or negative vibe. Seek groups that offer support or talk of recovery and most importantly are controlled, either by a POTS individual who believes in keeping focus and looking forward or as part of a therapy group, support group or medical treatment center you belong too.
My personal and professional opinion is to look at the bigger picture always. Every little variable counts and adds up in the end. The power of our environment in wellness is mindboggling and commonly overlooked. Search, seek and aim to read quality content, not the lack their of.
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