“My Long Haul Covid Journey-Crashing and Post-Exertion Symptom Exacerbation”RTV -(Respond to Video)
- How To TBI
- Sep 3, 2022
- 10 min read
Updated: Sep 5, 2022
A special thank you to Kate Harmon Siberine for sharing her video about re-navigating energy levels, spoons and new normals as part of her Covid Long Haul journey.
I’m thinking about starting a new series where I collect my responses to content from fellow creators in my community, in part so I can better keep track of the collected response thoughts I’ve had that have taken me time to thoughtfully compose, but also to remind me of and highlight the good work created by fellow shared community members so that others may also find their tips helpful along their recovery journeys.
Inspiration Backstory
Monica and Shelby Church are sisters on the west coast who are content creators focused on the lifestyle space, personal finance and diversified alternative income streams. Additionally, Monica is also a realtor in the Seattle area.
Monica Church recently shared a video entitled, “Influencer VS. Real Estate Agent: Which Is The Better Career For You?” where she talked about things she did when she first was getting started, & one of the strategies she had was responding in the comments & inbox messages to fellow YouTubers who were just starting out whose content she liked, and what she was talking about was both insightful and made sense.
You can see Monica’s video here: https://youtu.be/rLittYNZnMA
(check out @ the 5:59 mark in her video where she describes these strategies in her video)
Methodology
When I went to upload a video today about how to organize a drawer, by chance, I realized that my including a hashtag in the video description section actually led to a hyperlinked search on YouTube for other similarly hashtagged video description content.
I also came to realize that only the first 3 hashtags seem to show up under the video title name when you’re trying to view a video, at least in terms of auto, one-click searchability when clicking on the blue hashtag.
I performed some A/B-style tests with rotating what’s listed in the first 3 hashtags, and took a look at the search results.
I then went and made some inferences on who the likely creators were, and who the likely audience members were for some of the hashtags I was thinking of.
I wish there were a way to sort the search engine results page (SERP) within the YouTube search engine, by most recent upload date. If you know how to do this, please let me know in the comments section, below. Thanks!
High SERP seem to be content mostly created from major media conglomerates. The term #LongCovid is a term that was co-opted by the medical community and media publications, and chronologically came into existence AFTER those who had been experiencing covid symptoms for a long time started to gather, coalesce and share information with one another as part of the grassroots effort under the Survivor Corps facebook group umbrella.
Most of the results on the SERP look like they’re highly produced and from media and educational corporations with some first-person POV talking heads. This term is the focus for this blog in that it’s the first of the terms I’ve come to identify with when I was inspired to create this blog, but not everyone with a brain injury got theirs as a result of TBI.
This is the biggest of all the SERP results from the hashtags I tested. Everything on the SERP with incredible numbers of views looks like it was produced mainly by large global media conglomerates and are primarily short, educational bits meant to provide status updates on the course, in realtime, of the pandemic, at a global scale. The viewers of these videos are likely majority-wise the general public, with a minority being those who are actually affected first-person or tangentially by covid, themselves.
While I don’t personally have ADHD, there are overlapping commonalities in terms or executive functioning difficulties between those who have brain injuries (be they from TBI or ABI, covid, chemo brain fog, Lyme disease, etc.) and ADHD. A lot of this content seems to be parent-focused, as well as to actual adult patients who have ADHD. A number of those with ADHD, especially if diagnosed while still a child in school, may have found strategies for getting through everyday life, especially organization & structure-wise, helpful, and likely would also find the content I create, practically helpful, if they were able to find it.
The group I’m most interested in directly first reaching out to since they may be more readily in a position to engage with my content. While there is a spectrum to covid long haul in terms of the constellation of symptom type & severity, as a sub-population, the symptoms experienced by covid long haulers is more concentrated, is still in it’s infancy of research and understanding, and is not nearly as wide a spectrum in terms of severity of symptoms as the wide diversity that is present with the exclusively TBI sub-population. Also, there’s currently only 45 channels. Meaning, I could more realistically reach out to each one of them & meaningfully highlight the work that the individual creators are doing & I would likely learn new things from them, as well. In terms of wanting the work I’m doing to make a difference, this is probably a good place to start since it’d be more likely to get into the hands of those who could more directly benefit, and perhaps amplify our shared efforts.
🤔. BTW - Does anyone know what the different header colors mean in the YouTube SERP?
If so, please let me know in the comments.
Is there an ordinal nature?
Generated at random?
Also, just for a moment, can we take a look at compositionally, how different the top SERP thumbnails look for the search term, “productivity” as opposed to “organization?”
These look so minimalistic & tech guru-focused. Only about 1/3rd of them feature a first-person talking head face. The likely audience is individual/self-improvement-focused.
Bold, singular, vibrant colors feature in some of the backgrounds.
Most of the titles are written in bold font, often not in white.
Almost all of these thumbnails feature first-person talking heads, all of who, are women.
There’s a lot of stuff in the background, with lots of things for the eye to focus on in the background photos. Almost all of the font is white with some black outlining/shadowing to help the wording pop off the background image to help with depth perception & differentiation (BTW - an OT tip when composing the visual field and working distance and space between you, as a person, and everything immediately in front of you).
Prior to looking at snapshots of these two SERPs for #productivity and #organization, I would’ve thought the content creators & audiences would’ve been the same. There may still be high overlap, but, at least based on the highest SERP results, there do appear to be differences.
One of the things I learned a long time ago, was that meeting people where they already are is always the best & most preferable & effective thing vs. waiting around and hoping that they magically come to where you wish they’d already be. That’s always the first step to deploying an intervention after discovering & assessing for readiness for change.
Results
The results from my SERP for the following hashtags of interest, at least as of today, are as follows:
I once read about a strategy during my time at a prior workplace, that the way journalists use to find first-person accounts of people who were nearby bystanders or tangentially involved with an activity that the news was trying to cover, in real-time, was by searching twitter for tweets that invovled the first-person pronoun use of the word, “my.”
Ex:
my spouse,
my brother,
my co-worker,
my family,
my neighbor,
my boss,
my friend,
my block,
my house,
etc.
The operative, relational, searchable word here is the pronoun, “my.”
Strategy
I figured a good place to start in terms of finding & responding to other fellow content creators in the comments section was to start by looking for fellow covid long haulers, since they were:
1) more likely to be embracing that community self-defined term,
2) likely still personally and actively experiencing symptoms,
3) more likely to be actively engaged and thus,
4) more likely to be responsive (especially if they, too, are just starting out), and
5) would probably be more likely to find the content that I’ve created as useful
6) may help to gain some traction & momentum to help the YouTube algorithm pick up & surface the content I’ve created to others who would be more likely to find this content useful.
Conclusions
#CovidLongHauler probably best, logistically, to try to search out & reach out to, first, but I can probably also embed this hashtag further down in the video description without making it a Top 3, other than for SERP purposes.
#Covid may make sense to add in top 3 hashtags of YouTube video description, just because of reach.
#TBI while smaller reach currently, this hashtag should still likely be in the top 3 hashtags because of audience relvance.
Toss up between #ADHD, #productivity and #organization for the 3rd top 3 hashtag spots. The content creators, audiences, and willingness to sit through a long YouTube video (a.k.a., the type it seems like myine tend to be) are likely different (see my other video on the single-most unknown & underutilized application tool use case & game-changer of sequential ranked sorting in Notion & how I arrived at these results).
Actionable Order to Target Outreach
Top 3 Searchable Hyperlinked Hashtags
Though of Priority of Hashtags, mostly by 1st, 2nd & 3rd groups
—-Switching gears now from strategy & analysis, to actual content review & response—-
Kate Harmon Siberine’s video entitled, “My Long Haul Covid Journey - Crashing and Post-Exertion Symptom Exacerbation” was a 1st person POV, showed high above the margin fold in the SERP, had been uploaded within the past day, and her video had the same hashtag I was looking for, #CovidLongHauler.
As such, today I had the opportunity to come across, highlight & respond to a video that Kate Harmon Siberine shared about her covid long haul journey, specifically as it relates to exhaustion, post-activity engagement.
This is such a personal thing that I relate to so much, since exhaustion has a way of spilling over and impacting every single thing you do, every single day.
I still am at a point where I’m not able to function without taking 1 or more naps throughout the day.
When I feel disappointment creeping in,
I try to remind myself of how far I’ve come, and how for the better part of the first year, post-TBI, I spent almost all day, everyday, asleep & in constant pain.
I also try to remind myself that my rehab team said that when my body is telling me to sleep, I need to recognize and honor that and actually sleep, because my body and brain needs it, as opposed to trying to fight it and ward it off, and having that exhaustion exponentially amplify, and have ripple effects in terms of taking me out of commission even longer.
Pacing is a skill I’m constantly navigating & re-navigating along this journey.
You can check out Kate Harmon Siberine‘s video here: https://youtu.be/sIMvevioYUU
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Response Comments:
Relate so much to what you’re talking about 💐 One of the great pieces of advice I got is to think about why stand when you can sit, and why sit when you can lie down? Doing the less-mainstream way often helps conserve that physical energy for something you’d rather *choose* to do later on rather than spending it physically on something that doesn’t matter as much in terms of changing whatever activity you’re trying to do in the moment.
Have you tried using a physical planner book? I found that particularly helpful & enlightening, especially when blocking out travel time for different activities, which is often easily discounted and underestimated and the physical & cognitive spoon cost in doing so. I use an aqua-colored Pilot Frixion erasable pen to block out the travel time, and it’s amazing to see all the aqua on a weekly planner spread page, and knowing all of that, is travel time. Visually seeing those blocks has helped with better understanding the larger picture of how long something actually costs, spoon-wise (ex: more than 1/2 a day for something like a Dr.’s or rehab appointment when you include travel time, instead of thinking the Dr.’s appointment is only 10-15 min. and not fully factoring in the true cumulative energy cost for everything else that goes along with a Dr.’s appointment, like time spent commuting, then parking, walking to the lobby, checking in, waiting in the waiting room, getting labwork, seeing the actual Dr., scheduling a follow-up appointment, waiting at the pharmacy for meds, getting some food or eating a snack or meal, etc.).
The most eye-opening realization for me is that everything that’s involved with cooking takes me now time over 4 days, as opposed to all compressed into an afternoon, like before long covid & brain injury, due in large part, to the cognitive and physical exhaustion. It took me a while to realize that it actually now takes me this long because of the cognitive dissociation with the idea I formerly had in my mind about how long something *should* take me, based on how things used to be for me or my fellow peers, vs. how long it *actually* takes me, based on how things are, as of right now. I’ve come to realize there’s a constant redefinition of self, everyday, although who I am, at my core, is still the same, just the way it’s expressed continues to evolve and change.
Unsure if it’ll help you or not, but removing stimuli from the environment also has helped, not just the environment you *want* to be in, but also all the other environments you *need* to be in. Specifically, using noise-canceling headphones &/or earplugs, dark sunglasses, and laying down on a yoga map in a quiet, dark room, before slowly switching activities. Combined with arriving later after events start and leaving early, these modification strategies have helped to keep the cognitive & physical energy cost down lower to make it more likely I can participate in activities I *want* to do (like go to a museum event) despite doing other activities I *have* or *get* to do (like grocery shop) in the same day, or series of days.
I sometimes feel a little self-conscious when I’m utilizing these accomodative aids, such as large noise-cancelling earphones and dark sunglasses, especially since I can feel self-conscious in noticing when others are staring, especially since I prefer not to have that kind of staring, voyeristic attention from strangers, but I try to actively counter that self-doubt by reminding myself that these devices are there to help me so that I can last longer doing the things I actually enjoy, want to do, and with those I love, and when I actually started seeing that they did empirically allow me to function better for longer in my chosen environments, I came around to embracing their utilization more because they made such a meaningful difference in terms of quality of life, & I’m incredibly thankful for them & glad.
Sending lots of good wishes ✨ Keep up the great work!
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