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#HAchat Recap: Health Activists Define "Awareness"

For those of you who didn’t tune in to yesterday’s fabulous #HAChat, the topic was “awareness.”  What does awareness mean to you and your community?  For many of Health Activists, spreading awareness is what made them open up about their disease. KatharineS84 said, “I’m excited for this topic because it’s the main reason I started opening up about living with #cysticfibrosis.”  However, in following yesterday’s conversation, it became clear that “awareness” doesn’t have a very clear definition. It takes on a different meaning depending not only on your perspective as a Health Activist, but also depending on your condition.  Awareness of diabetes will certainly differ from that of multiple myeloma, as will expectations of how aware others should be.  Some definitions from our chat yesterday included:

tmana “Awareness” means many things depending on context. We expect gr8er understanding from patients, activists, friends/family #hachat.

lizzmariposa To me, being aware of any health condition is a conscious decision we make to embrace knowledge, information, and the human factor. #hachat

ncrainbowgrrl T1: that there are actual people living with these conditions/ diseases and no, we don’t look any different…

kimmieCollas T1: recognizing that even if you don’t understand what we’re going thru, we ARE sick, not faking #HAchat

tmana T1. Also, that medical management technology is NOT synonymous with “cure”, and that costs incl physical, psych, social, and fiscal #hachat

So with so many different opinions and perspectives, how can we define such a broad concept? I’ve decided that awareness isn’t quite one thing, but a combination of many.  Here’s what I came up with:

Awareness isn’t quite understanding. According to @KatherineS84, “understanding comes with experience.”  Awareness is having a basic understanding of what a disease or condition is and how it affects the body and mind. It’s enlightenment and education.  It’s seeing past the condition and into the affected person.  It’s respect, empathy, and an openness and willingness to learn.  It’s a state of mind in others that makes you feel that you are not alone.

Awareness isn’t quite knowledge. If it was, then patients wouldn’t feel alienated or misunderstood by healthcare providers.  Doctors would understand pain and you wouldn’t be accused of faking. Patients would feel that they are heard and their experiences understood. If awareness was knowledge, then reading a text book would allow you to understand what it’s like to live with lupus, to survive cancer, to have diabetes. On your side, awareness is having the knowledge to understand what your doctor is saying, and to be an equal participant in your care. As NataliaElizabea said, “I think sometimes being aware goes hand and hand with being able to question the facts as they are presented read between the lines.”

Awareness isn’t the same for everyone. For some, it’s self-awareness, awareness of your condition and how it will come to affect your life. As KatharineS84 shared, “As a patient, I had to become aware myself before I could move forward. Denial can be a difficult hurdle, but it’s key.” And, similarly,  @ncrainbowgrrl noted, “I also need to make sure I take care of ME while helping to educate others.”

For others, awareness means support. It means your friend/family member/caregiver has the understanding and the respect to be there for you even if they don’t quite understand what you’re going through.

For communities, awareness is recognition, acknowledgement of a condition and the physical, emotional and economic implications it has on those if affects.  For some communities expectations will be high, but for niche communities they will be lower.

sanmees Awareness can vary by community- the awareness goals for an unknown condition will be different than one with a lot of coverage. #HAchat

KatharineS84 @susanmees So true! For #cysticfibrosis, goals start out basic due to lack of knowledge of most people. #hachat.

Not only will levels awareness differ between people, but awareness is knowing that not all patients are the same.

tmana Certainly important to recognize that in some silos, there is a wide range of effects on people-living-with, from mild to devastating #hachat

GermanInAlabama A huge part of awareness for me is recognizing that there are many facets to each story/condition. There is no one size fits all #HAchat

Awareness isn’t always a means to an end. Awareness isn’t always about raising money, though it can play an important role in attracting donations.  It’s not necessarily about reaching a goal, such as a number of people educated about your condition. Awareness goals will also depend on whether you’re a patient, caregiver, healthcare provider, or a Health Activist:

lizzmariposa I think awareness goals are ultimately spurring curiosity in people to learn more, seek more, question more, HUMANIZE illness more. #HAchat

wegohealth T4.1 As Health Activists, we can learn more about others’ conditions & bridge gaps. We can teach others what works re: awareness. #HAchat

wegohealth Humanizing a condition & presenting the narrative piece is a great way to make awareness “stick” & people to really care – I think. #HAchat

Awareness isn’t just a state of being. It’s a continuum. As kimmieCollas shared,  “Awareness is a spectrum – there is always something new to learn.”  It’s changing all the time depending on new drugs/treatments/test/procedures, and the especially by the way we can access information on the internet.  The level of awareness reached by each person will differ as well.  Some will stop at only a basic level, because as GermanInAlabama said, ” re:stopping at basic awareness: It’s easier. More comfortable because becoming more aware might mean becoming involved.” For others it will depend on their direct exposure to a condition.

Finally, why be aware?

bobutler T3: It’s bad enough to be suffering from something. It’s far worse to feel as though you’re suffering alone. #HAchat

Have any other thoughts or ideas of what awareness means? Share this post and start a conversation in your community.

See you at next week’s #HA Chat!



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