Since I was a little girl, I have never been shy about my health troubles.
My mom always said, “we share for the girl who comes behind you” meaning for the next young girl who is faced with uncertainty, we share our experiences to create understanding.
Not only did I have an instinctive need to share what was happening to me, but I truly couldn’t hide my illness.
My conditions are invisible, at times, but also very visible, at times.
Its visibility is a result if I am having a reaction, a flare, or not feeling well. Even if you can’t see it, sometimes I am still going through something even if its not visible on the outside.
The attention being disabled or ill can result in is often overwhelming. No one wants to have all eyes on them in their most vulnerable moments. Even if you want awareness, its hard being in the spotlight when you don’t feel your best.
Sometimes, blending in is the easy thing to do, but standing out, by choosing to be verbal is what creates awareness and change.
Whether it’s sharing with people information about allergies, or advocating for accessibility, perhaps discussing the importance of disability acceptance, rambling about the impact of mental health in disabled communities, or just sharing every day experiences, it adds ups.
When speaking out even if it is as simple as a Facebook post or tidbit shared in passing with someone, each experience leaves an impression and overtime,
Each time we choose to be vulnerable and share a piece of our lived realities, someone else gains the value and insight as to what life may be like for someone with a chronic illness or disability.
It’s hard. Being the advocate and being brave enough to share your reality is challenging, but worth it. The person doing so is subject to judgement, questioning, and scrutiny. Yet, opening up creates room for improvement, understanding, and awareness.
When sharing, the prize is in the pudding. Those impacted by a certain illness or condition are positively impacted when people draw attention to their truth.
3 ways to ease into sharing your truth
If you have a chronic illness, the hardest part in becoming an advocate is starting. Once you become comfortable sharing your story, it gets easier. Here are 5 ways to lean into becoming your best self advocate:
- Share on social media- its easier to speak freely when you aren’t face to face with someone. Start by sharing your story online. You don’t owe anyone anything, share what you feel comfortable with.
- Spark someone’s curiosity- start by engaging in conversations with others that you feel comfortable around. When you show interest in someone else’s story, it feels easier to open up about your own struggles.
- Join an online support group for a condition you have- those who are experiencing similar battles tend to be good soundboards. Open up in an online support group, gain empowerment, and then feel more comfortable speaking about your story
There’s no right or wrong way to share your story. Any attention that draws people in has the possibility to impact those with similar conditions or improve the overall experience.
ArtRoot Writer-In-Residence 