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TJ Wolf
Life With Lupus: Online Community Review - BetterDays
2021-12-19
About The Author
I have the deadly disease known as Lupus. The version of Lupus I have is the most common, Systemic Lupus Erythematosus (SLE).
True to its name, SLE is a systemic condition throughout the body.
In addition, I have Lupus Anti-Coagulant and Lupus Anti-Phospholipid which causes my Lupus to impact my blood.
Pictured - my actual hand when Raynaud's is triggered.
I also suffer from several chronic illness comorbidities such as Raynaud's Disease and Osteo-Arthritis.
Life With Lupus: Online Community Review - BetterDays
My Login Screen - BetterDays/TJ Wolf
Please note this review is NOT a paid endorsement.
This is my own review opinion as someone who utilizes the platform (and believes in its mission). In full disclosure, I was permitted to participate in the BetterDays beta tests as a volunteer. I provided feedback directly to the BetterDays CEO on what I thought was of value from the perspective of someone with Lupus. So of course its reasonable if you assume there is bias from me in favor of BetterDays. This given they listened to my feedback while still building and coding the application.
Logo/Rob Castellanos
BetterDays
Recently launched on March 31, 2021, BetterDays "helps people take on chronic illness, together".
BetterDays openly states their purpose and invites others to Stand with us and join our journey.
The company’s vision, belief, and mission include respectively…
A world where health is equitable for all
Solutions for the underserved = solutions for all
To build technology that empowers the individual, unifies underserved communities, and transforms healthcare for all
I find the new, bright, and clean user interface of BetterDays to be a great user experience with many easy to use features
Experience Screen - BetterDays/TJ Wolf
Microsoft's Edge browser screen capture of a BetterDays "Experience" I posted that links to the Lupus Foundation.
Whatever I could think of was easy to find and supported.
Features such as…
profile details including medications and conditions
profile picture
Profile Editor - BetterDays/TJ Wolf
create posts and comments to share my health experiences
add links to other sites to reference articles, posts, or pictures
ability to mark posts “useful” in support of others who post
tag posts with conditions
filter the health experiences by what is relevant to me such as "Lupus" or "Systemic Lupus Erythematosus"
Experience Image - BetterDays/TJ Wolf
image uploads
optional email alerts for new members, new experiences, or comments
text formatting support
supported by my phone, tablet, and desktop computer
The community itself was open and inclusive. I found belonging cues were easily created via the interactions with others with the same or different conditions.
For more information about BetterDays please see the following article I volunteered to write for their CEO, who also suffers from his own chronic illness...
In short and perhaps unscientific terms, SLE is my own immune system betraying me and deciding to wage war upon various systems in my body. My immune system incorrectly targets these systems as enemies and marks them as invaders. Then it targets my cells, tissues, and organs in those systems for destruction. This destruction begins with inflammation and its other biochemical weapons and agents to kill cells and shutdown organs. My Lupus likes to focus on vanquishing its own perceived axis of evil in the form of my circulatory, nervous, digestive, and musculoskeletal systems.
The Wolf Within Me
Lupus is currently not curable. My Rheumatologist uses the analogy that my immune system is a wild animal that we attempt to keep caged in remission with powerful and yet toxic medications. So of course given its “Lupus”, I associate a wolf as the wild animal within me. Frequently the caged wolf is still able to take a swipe at me from within the bars of cage. And many times the wolf breaks free to wreak havoc on me until medications are increased or added to suppress it again. These events occur despite me taking all my medications daily as instructed. My wolf has its own plans for me it seems. And surprisingly enough, those plans may include me becoming a better person.
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