Today I was reading a new-to-me blog, and I was struck by an interesting thought. The blogger was talking about her near-death experience, but she chose not to reveal what her medical diagnosis was. I see that a lot on blogs. In fact, I’ve probably been cagey about some of my conditions as well.
Health, it seems, is one of the last things we don’t discuss in public.
Crew Dog, One Sick Vet
The fact that she chose not to reveal her diagnosis is interesting to me for several reasons. First, because she is a personal finance blogger, and they’re known for talking openly about another taboo subject – money. Second, she chose not to reveal her diagnosis even though she blogs anonymously. Third, as someone who is chronically ill myself, I always wonder what the unnamed condition is, and whether I can personally identify with/learn from this other person when I come across such a blog post.
So why don’t we blog more transparently about our health? How much of it is influenced by the ableist paradigm that is dominant in our societies? In the U.S., where I live, people are very uncomfortable talking (or even thinking) about illness, disability, or death.
While I will admit that it can be very tedious when someone traps you in a conversation in which they go on and on and on about every excruciating detail of their health issues, the great thing about a blog is that, if you don’t like, aren’t interested in, or find a certain post boring or uncomfortable, you don’t have to read it. You’re not trapped in the conversation (monologue).
Why else might someone choose not to discuss their health, or not to reveal their diagnoses/conditions? I’ve been thinking about this one a lot. And I think one concern is that social media can be used against the content provider. What do I mean, specifically? There might be an underlying fear that information provided on social media could be used against the individual by the healthcare insurer.
In the same way that job applicants occasionally find themselves not receiving job offers or having offers revoked, and students applying for higher education occasionally find themselves not receiving school admissions, or having offers revoked, due to content they have posted on social media, patients might fear that insurers could use information about their health or daily lives provided on social media to disapprove treatments, medications, or coverage.
Don’t believe that could happen? I’ve heard many chronically ill people state that their applications for disability were denied because a picture or a statement on social media was used as evidence that their condition was not as disabling as they claimed.
Like the Brady Bunch episode “Fender Benders,” in which a man unscrupulously tries to claim car and physical damages which were not caused by the minor car accident, but is exposed in the nick of time as a fraud when Mr. Brady drops his briefcase on the floor and the man turns his neck at the sound, proving his injury is false, people seem skeptical about any chronic illness or disability and they seem eager to disprove these conditions.
Don’t believe me? How many cases have you seen in social media of everyday citizens shaming someone for parking in a disabled parking spot because they can’t see the disability, or don’t believe the individual is really disabled, or because they “look too young to be disabled,” or even shaming a woman for parking in a disabled veterans designated parking spot – news flash, women are veterans too.
How many posts or memes have you seen shaming a person in a wheelchair or on a scooter for standing up to reach something off a higher shelf in a store? I’ve seen them. They usually say something like, “Look, it’s a miracle! They can stand!” Well, guess what? Not everyone who needs to use mobility aids is a quadriplegic, or even a paraplegic. Not everyone has visible signs of their chronic illness or disability. And you, average, everyday citizen, are not the disability police.
But what about the people whose actual job it is to process disability claims or investigate for insurance fraud? Would you be surprised to learn that most of them do not have medical degrees or training? Most of them aren’t chronically ill or disabled either. So why are they the ones making life-altering decisions affecting healthcare and finances of chronically ill and disabled individuals? For that matter, most DOCTORS don’t understand chronic illness or disability. So even placing medical personnel in these positions might not alter the outcomes. Their job is not to weigh the evidence and reach an accurate and fair decision – their job is to save the company (or the government) money. By denying claims. Denying coverage. Denying medications. Denying treatments.
In personal finance blogging, you can write about whatever you want, and no one will appear and take away your investments or your pension (should you be lucky enough to have one). The worst thing that could probably happen is that the IRS might decide to audit you in response to something you wrote in a post.
But in chronic illness/disability blogging, the stakes are much higher. Because, unless you’re able to pay cash for the medications, treatments, and consultations you need, you’re always vulnerable to your healthcare provider/insurer. You’re always vulnerable to them denying payment, or denying coverage, or terminating your coverage.
“Unless you’re able to pay cash for the medications, treatments, and consultations you need, you’re always vulnerable to your healthcare provider/insurer.” – One Sick Vet, onesickvet.com
The costs of healthcare are getting higher and higher, and institutions and organizations are looking to cut costs by reducing coverage and denying coverage. Many organizations have reduced healthcare costs by hiring mostly part-time employees with no healthcare benefits. Retirees with company healthcare benefits are finding the premiums going up and up in retirement.
So you can understand why a blogger might choose not to reveal their diagnoses, their conditions, publicly. Even if they’re not concerned that you would “look at them differently” after that, even if they decide they don’t care that they could be labelled and seen as “nothing more” than their disability, the biggest fear is that they would always be wondering, “Is something I casually share going to affect my healthcare coverage?”
It’s easy to see a person in a wheelchair stand up and think “They’re not really disabled.” Or to see a picture of someone outside and think, “See, there they are, doing the thing they said they couldn’t do. I knew they were lying.” But what you don’t see is the 20 minutes (or longer) that wheelchair user sat in the parking lot trying to get up the energy to get back into their vehicle, because they used all of their energy to stand up in the store and reach the thing they needed or really wanted, which was located out of their reach. You don’t see that the person who was outside doing the thing had been in bed for days beforehand, storing up as much energy as possible, and will be in bed for days afterward to recover from having done the thing. You don’t see the vomiting, diarrhea, migraines, inability to breathe, and other effects that come from exposure to your fragrances, and so you conclude, “See, they’re not *really* allergic to fragrances! I wore some and they were fine.”
There’s a lot you don’t see, and we probably would never tell you (unless asked compassionately), because we don’t want to be that person described above who traps you in a conversation about our illness, disability, or special needs that you’re not interested in hearing about. But just because you don’t see, or hear, or understand something doesn’t mean it isn’t real or true. And just because you see or hear something doesn’t mean the conclusions you draw from it are true or accurate.
So am I apprehensive to share on my blog that I have chronic, intractable migraines, in case you also hear or see that I eat chocolate? Does it make me a “faker” and threaten my healthcare coverage that I eat chocolate, because “everyone knows” that chocolate is a migraine trigger? No. Because EVERYONE’S BODY IS DIFFERENT. I happen to be able to eat moderate amounts of chocolate without getting a migraine. That does not mean that I don’t have chronic, intractable migraines. I do. I was diagnosed over twenty years ago. No medications helped (until Botox). In fact, because everyone’s bodies are different, one of the primary classes of medications given to migraine patients is contraindicated in my case. The supporting evidence that Botox significantly improves my quality of life is much greater than the supporting evidence (mostly anecdotal) that chocolate triggers migraines. That’s a health condition I’m willing to reveal, and a fight I’m prepared to fight.
Even though migraine is a woefully under-researched condition, and the condition is still little understood, there is sufficient evidence to defend my diagnosis, course of treatment, and personal behaviors. I have other heath issues that are even less understood, probably because they are even less researched.
These issues I have been more reluctant to talk about on this blog, for several reasons. First and foremost, I do not want to foster or spread false information. If I claim to have a condition, and I state certain things work for me, and then it turns out that’s not really what I had after all, I might have provided incorrect information to you. [Even though I AM NOT A DOCTOR, and anything I share on this blog is for entertainment or informational purposes only.] Second, since I don’t have diagnoses for these conditions, I don’t have research to guide my actions or defend my actions. I could be inadvertently jeopardizing my healthcare coverage if I say things on this blog that could cause a provider or insurer to disbelieve my physical limitations or to deny coverage or treatments. [Update since the original draft: I have received several more diagnoses from medical specialists, and may mostly have all my conditions diagnosed now.]
After all, if I talk about doing something, being active, in someone’s mind that means I’m not “really” chronically ill or disabled, right? You don’t see the two times I lost an entire year of my life to illness, and did nothing more than move from the bed to couch and from the couch to the bed (most days – some days/months I stayed in bed, or lived on the couch 24/7.)
Tanja Hester at Our Next Life is a big proponent for transparency in the FIRE [Financial Independence, Retire Early] community. As I understand her position, she believes that FIRE social influencers should be transparent about their sources of income and about whether their financial independence and/or early retirement statuses are due to the techniques and actions they espouse on their blogs/podcasts/channels, or whether there are supplemental sources of income such as inheritances or income from social media outlets that have enabled or supported their lifestyles. IOW, is what they recommend to others and assert they have done themselves replicable*? If you followed their advice, could you achieve the same result? [This transparency can be achieved whether one blogs anonymously or whether one’s identity is public knowledge.] *[See here for an interesting scientific article on the terms repeatability, replicability, and reproducibility.]
I applaud Tanja’s efforts to encourage the personal finance industry (or, more specifically the FIRE community) to be transparent about their recommendations and their outcomes (in scientific terms, their methodologies and results), so that others are not misled by purported results that are not replicable.
Since every human body is different, you could argue that replicability is difficult to impossible in human health. And yet, scientific experiments (like drug trials) do achieve replicable results that apply to a majority of human beings. But there are also typically outliers and exceptions. Research shows that there also may be differential results attributed to racial differences with some medications (see here and here for two medical articles discussing this topic).
So, can one blog transparently about personal health? Yes, I think so. In case I have not stated so publicly before, I do my best to present information on this blog that is scientifically-based, and to cite [link to] my sources. I don’t ask you to take my word for it – in fact, I prefer you to do your own research, your own due diligence, regarding anything discussed here.
When someone personally testifies that they tried a health product or a technique and it worked for them, you have an experiment that may or may not have been conducted scientifically and that is comprised of a sample size of 1 (possibly a few more if a partner or children are also included in the experiment). But when a research study or clinical trial is cited as evidence, you can read the study, report, or article for yourself and evaluate the methodology, samples, data, and conclusions for yourself. If a health technique or product has been tested multiple times, with a large number of participants, and the results have been primarily favorable, then the odds of it working favorably for you are much greater.
I pledge to write about personal health transparently, such that I will always cite the sources for the information I am sharing, and I will distinguish between scientifically-based and non-scientifically-based sources. I will present my own experiences accurately, and let you draw your own conclusions.
Crew Dog, One Sick Vet
Addendum: Since I originally drafted this post, healthcare has become even more fraught in the United States. Governing bodies are being decimated. Benefits are being slashed. Scientific evidence is being undermined. Chronically ill and disabled people are publicly mocked. Nevertheless, I will do my best to provide scientific evidence for information I share on this blog and all other platforms. And I will continue to share my thoughts and experiences.
If you want to join the conversation, let’s use the tag #TalkAboutDisability.
