In one of our recent #CreakyChats, titled “Pride & Chronic Disease,” we asked our LGBTQ+ community members to discuss what Pride means to each of them and what it’s like to navigate the health care system as queer people. “Some are taught to always be humble and that pride should be silent. The truth is, if you don’t take pride in yourself and ALL communities you are part of then your communities will continued to be silenced,” wrote @djali_here on Twitter.
Ankylosing spondylitis patient and visual artist Sal Marx collaborated with several of our patient advocates beforehand to create graphics sharing their unique stories.
Read the open and honest responses below and join us in advocating for inclusivity and accessibility during Pride Month and beyond.
“I grew up in a very religious household. There was much more stigma and violence when a person came out. I didn’t come out until age 24. So pride is extremely important to me because it took me so long to get here and I’m not going back.” — @UnxpctdAdvocate
“Pride means being comfortable and confident in who we are, finding our own way, and yet also recognizing that we are independent and interdependent on our community.” — @GryasonGoal
Credit: Sal Marx
“Marginalized communities have already been stretched so thin in this country that are existence is an act of protest. We take pride in our lives because who else will?” — @kelseysmigraine
“The line is blurred between my sick identity and my gender identity. As an AFAB kid seeking a chronic pain diagnosis, I faced stigma and delay in [diagnosis] — AS was considered only a “man’s disease.” — @salmarx11
Credit: Sal Marx
“To take pride in our lives is to welcome in our worth. In doing so, we set proper boundaries, are respectful, and come from a place of love. All of which are needed in fighting oppression.” — @IndecentAvocado
“It’s seeing how chronic illnesses don’t care if we’re LGBTQ+ or not. If the “straight” with chronic illnesses don’t show care or concern for LGBTQ+ with the same, it’s a failure of empathy. We have to think about each other.” — @Adrian7745
Credit: Sal Marx
“Being bisexual + nonbinary is linked to my chronic stress + trauma. Stress + trauma are linked to inflammatory disease. Accepting + choosing to be who I am is the only way I can manage my conditions. Safety + authenticity are crucial for my health.” — @tehcakelin
“My queerness and my chronic condition are such a huge part of me. I realize for the most part every single doctor’s appointment I have where I see someone new. I have to come out which still makes me nervous because I’m unsure how I’ll be treated.” — @migrainesallday
Credit: Sal Marx
“The systems in place take away our ability to be whole in all aspects of our lives. Pride is a way to reclaim what we know in ourselves to be true: we are valid humans worthy of equity and joy.” — @BeingCharisBlog
“We have to love our community to want to create better space, opportunities, and lives for the people in it.” — @Xtel007
Want to Get More Involved with Patient Advocacy?
The 50-State Network is the grassroots advocacy arm of CreakyJoints and the Global Healthy Living Foundation, comprised of patients with chronic illness who are trained as health care activists to proactively connect with local, state, and federal health policy stakeholders to share their perspective and influence change. If you want to effect change and make health care more affordable and accessible to patients with chronic illness, learn more here.
