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A Grey-Zone-Thinker Gets Her 1st Flu Shot

Jana Buhlmann is a 51 year old patient and caregiver advocate, and this year she received her first flu shot. The pandemic has made it clear that this choice was not about her.

I recently tweeted about my experience with the flu shot, a first at 51 years of age.

I would like to massage the word limitations of that thread into something more fulsome, hope it offers pause, and augments your perspective in this time of fear and reaction.

I am not a doctor, so it’s an honor to be asked to pull my words forward in this space.

In the healthcare realm I identify as a patient, caregiver, and MAiD (Medical Assistance in Dying) advocate.

I have been watching the pandemic unfold from this lens, pondering what is no more and what might become.

 

In the healthcare realm I identify as a patient, caregiver, and MAiD (Medical Assistance in Dying) advocate. Click To Tweet

 

I have strong opinions about advocacy work as rooted in lived experience;

I have a huge responsibility to the stories that I bring forward as they are mine.

I have begun to look at advocacy as a job, and my story as my qualifications.

And so it is with those qualifications in hand that I want to speak about why I chose to receive a flu shot.

 

I have trouble with the world in which we live at present because I am a grey zone thinker.

I like the question, “What if?” And this is a time of wide swings and polarization.

I find myself taking a lot of quiet. But I also think that quiet facilitates spaces for those whose voices are often silenced.

I have chosen to speak about my flu shot because . . . well it feels a bit hands-across-the-grey zone.

I was afraid.

I still am.

But my fear is overridden by a new and current understanding of what it means to be part of a whole, in this case – society.

 

At the age of 14, I found my first bald spot.

If you know anything about the autoimmune expression Alopecia Areata, you know it is unique to the person that it impacts.

In my case the loss was slow, with one period of regrowth in my late teens, and then progressive loss over decades.

 

I have trouble with the world in which we live at present because I am a grey zone thinker.

 

I like the question, “What if?” And this is a time of wide swings and polarization.

 

I lost my eyebrows in my 30s, and now in my 50s my leg hair is finally going, which is a rather cruel yet welcome joke.

 

The Alopecia community is where I got my start as an advocate.

We live with what might be dubbed an aesthetic disease, and I was like many in that for years I noted I was “not sick.”

Now I like to speak of the shades of this disease expression. My immune system is on hyperdrive, and it is confused.

No, I do not feel sick.

I am also privileged in not managing other autoimmune expressions beyond the odd bout of iritis and irritable bowel.

 

The Alopecia community is where I got my start as an advocate. We live with what might be dubbed an aesthetic disease, and I was like many in that for years I noted I was 'not sick.' Click To Tweet

 

The expression of alopecia areata – hair loss – is predominantly a personal, psychological, and social one to manage.

I choose to live my life “uncovered,” but I know my fellow community members who choose to cover are living with the same fears and insecurities that I have integrated into each day over the 37 years since that first small patch.

And it is my alopecia “qualification” that has shifted my thinking over time regarding some of our more common health terminology.

You will note I use the word “manage.” I think it’s the apt verb for what I attempt to do with my health on a daily basis.

But I also think manage is a more realistic word than “cure.”

It acknowledges that I am in relationship with my body, and that I invite healthcare into that relationship.

 

I think manage is a more realistic word than 'cure.' It acknowledges that I am in relationship with my body, and that I invite healthcare into that relationship. Click To Tweet

 

The other word I stopped using as my experience with both alopecia and advocacy grew, was “cause.”

I prefer the word “trigger,” and in using it I give a nod to all of those alopecians who have argued and debated and commiserated with me over the years.

My view of my alopecia is that it commenced after the introduction of a new and sudden stressor, but I know others in community who believe that equally unique triggers brought on their fall.

 

And so I round back to the flu shot, to vaccination.

At this point in my narrative I am hoping it does not surprise you to hear me say that I believe two things can be true at the same time.

My feet are planted comfortably in the grey zone when I make this statement, but I do get a little uneasy as I step into these next words.

 

I prefer the word “trigger,” and in using it I give a nod to all of those alopecians who have argued and debated and commiserated with me over the years.

 

There are those that believe their alopecia was triggered by vaccination.

The hard stories I have heard or read in this regard are from parents, whose children lose their hair within days of a booster or other age-based vaccine.

Some of these parents shift their beliefs, which I guess puts them in the same boat with those we now label “anti-vaxx.”

But others hold two truths not unlike me.

They know the vaccine will protect their child, and they believe – sometimes with the fortunate support of a medical professional – that it also triggered an autoimmune response.

 

So I have just explained my fear of the flu shot.

My hair is gone, but where might my confused immune system turn next?

Of course I have had the flu over the years, and my management of it also lulled me into thinking I “faired well.”

 

Then along came Covid.

It may be a polarized world, but the pandemic has also elevated the concept of the collectivity in our mindset.

Collective trauma.

Collective fatigue.

 

Then along came Covid. It may be a polarized world, but the pandemic has also elevated the concept of the collectivity in our mindset. Click To Tweet

 

To be sure we experience this global event differently dependent upon a myriad of factors, most particularly the social determinants of health.

But the collective consciousness is what has shifted people such as myself.

Did it cross my mind that a covid vaccine might trigger an autoimmune response? Sure.

Did I hesitate to get both of my shots? No.

 

Did it cross my mind that a covid vaccine might trigger an autoimmune response? Sure. Did I hesitate to get both of my shots? No. Click To Tweet

 

I shared my decision to get a flu shot for the first time with a friend who is a few years old than me.

I was surprised to hear that he too, was now choosing to receive his first.

“I realized that this is not about me,” he said, when I asked what had changed. “Covid has made me realize that I am doing this for others.”

My friend is right, and there are a lot of things right now that are not about me.

This kind of collective push has also brought with it the realization that there is no “us and them,” which can be a hard pill to swallow when witness to some current human behavior.

I think that is why I chose to speak up on Twitter about my flu shot. Hands across the grey zone.

 

This kind of collective push has also brought with it the realization that there is no 'us and them', which can be a hard pill to swallow when witness to some current human behavior. Click To Tweet

 

Take a good look at me, for I am just like you.

I am managing fears, sometimes more aptly than others.

I am changing and challenging myself from within those fears.

And I am doing my best to listen to a range of voices such that I hear how fear differs within this collective we call society.

And now I will be silent so you can let my words soak in.

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