Since late 2023 I have been handling all of the social media posts for Adrenal Insufficiency United. That in and of itself is a rather big undertaking. Managing the social media is walking a fine line. Most of what is posted is for people who already have a diagnosis that includes adrenal insufficiency or they are undergoing testing for it. But adrenal insufficiency, is a complicated and confusing diagnosis that can be life threatening and I still never know how things will be taken - that includes something like what I pictured above.
April is adrenal insufficiency awareness month. Having a child with an Addison's Disease - it is primary autoimmune adrenal insufficiency. It is also a rare disease. Early on in my advocacy in this space I had to make a decision on where to put my energy - we all know there are awareness days/months for literally everything - I recently enjoyed celebrating National Grilled Cheese Day!! But anyways...there is a day recognizing Addison's Disease, but that is so rare that I thought that scope was too narrow for me to focus on. There is awareness on autoimmune diseases, a whole month in fact, but that is so wide ranging and most of it would probably focus on the more common ones. So, early on I decided my energy would go into rare diseases because many of the battles faced among the rare disease populations are so similar - and the rare disease community is amazing!! And I decided to get involved with adrenal insufficiency, specifically AIU, because it all just clicked with what I needed to do the most for our son.
This month on April 1st I created and posted the above graphic. Many liked it, loved and shared it. I saw some using it as a social media cover and as a way to start conversations on their own social media pages. That was the intent when I did it - awareness is one of the biggest ways that we can bring about change. But then there were a few who obviously were not happy with the post. I got responses that voiced that for us every day is an awareness day and that they did not want an awareness month for adrenal insufficiency. And of course that is true of all of us who have adrenal insufficiency are who love someone who does. Having an awareness day can feel redundant - that last thing we feel we need is to be made aware of it. But I would like those same people to think back to a bad experience in the ER or at a pharmacy, when a doctor did not understand the intricacies of adrenal insufficiency and how it effects every aspect of ones life.
I look at the wonderful job that certain conditions have done with their marketing of awareness - think Breast Cancer, everyone sees that pink ribbon and thinks of one thing, sure, it is not rare now, but their awareness is next level. The other health organization that has excelled at this is Alzheimers - with them it is to the point where every form of dementia is often labeled as Alzheimers, though not all are. I think this is all due to the outstanding branding and marketing of their organization. Adrenal Insufficiency could one day be known like those - while it is complicated and often misunderstood it is not all that rare, but is caused by over 50 different conditions, many of which are rare. And if AI were to be recognized at that level, would Big Pharma be so quick to stop running one line of our meds for others that made them more money? It is easy when it is not well known and has little impact on their bottom line? If AI were more understood, would many people affected by it spend years trying to convince doctors that their symptoms are not "all in their head", but that when their body does not produce cortisol it affects every aspect of their life and when they are shot down by medical facility and medical facility they do get down? If it AI was more understood would our emergency injection still be 14 steps long?
While those of us with adrenal insufficiency or who love someone with it do not need a month to acknowledge it, or even a day - the rest of the world does. The only way to bring about the changes that need to happen is for advocates with huge hearts and bigger mouths to use them. Change will not happen if we sit back on our hands and let things be how they are now. Change will not happen if we continue to let medical professionals continue to not understand adrenal insufficiency - the complexities of it and the impact it has on every aspect of life.
In April I will give my all to spreading awareness of Adrenal Insufficiency and sharing as much as I can. I share so others can share, so others can learn, so that one day adrenal insufficiency will not be as difficult to diagnose and treat as it is today for so many.
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