#DearSurvivor Chat

It’s Sexual Assault Awareness Month. I haven’t posted much about it because I don’t know what to say. I’m a survivor myself and, sometimes, it’s hard to provide emotional support and love through those things.

I tend to share about my abuse over on Medium instead of here. If you’re interested, here’s more information about my personal journey:

My friends over at HEART Women & Girls wanted to do something to support survivors like me.

On Wednesday, April 19th at 1 pm Eastern, join HEART in using the tag #DearSurvivor on Twitter. You can share messages of support and love for survivors across social media.

I know I’ll be thinking of things I wish I had been told.

HEART Women & Girls: Launchgood Campaign

HEART Women & Girls is one of my favorite organizations. They are a Muslim-led organization that focuses on promoting sexual health, personal agency, equality, and awareness of sexual violence. By ending the silence of all these issues, we can help to end problems.

They are currently working to raise money in order to grow their virtual library. These beautiful resources are great for everyone, no matter your religious or spiritual background. Check out their birth control FAQs video below:

It’s so important, especially now, for us to support the Muslim community in these endeavors. HEART is a great organization with amazing resources that are so useful to so many. I, for one, am excited to see what amazing resources they come up with next.

What’s on the docket? Videos on anatomy, menstruation, talking to doctors about reproductive/sexual things, pap smears, and more!

Would you like to help donate? Visit HEART’s campaign on Launchgood.

 

HEART Women & Girls: Language of Love chat

HEART Women & Girls is one of my favorite organizations. Their whole existence is based on sexual health for all but especially focused on women and girls in Muslim communities. One of the things I love the most? Their focus on both emotional and sexual well-being in relationships! They run workshops, hold events, and have an amazing array of resources.

HEART is running a chat for Valentine’s Day! They’re asking participants to discuss what healthy and positive relationships look like using the hashtag #LanguageofLove.

I’ll be joining in on Valentine’s Day from 2-3 pm Eastern – will you? Find HEART on Twitter here to join in.

Why Movements Like #PatientsNotAddicts Are Ableist

The website Stop Ableism defines ableism as the following:

Practices and dominant attitudes in society that devalue and limit the potential of persons with disabilities — OR — a set of practices and beliefs that assign inferior value (worth) to people who have developmental, emotional, physical or psychiatric disabilities.

With the recent conversations about the abuse of opiates in the chronic pain community, I find myself thinking about this definition a lot. There are patients who use hashtags for other movements to show their battle with pain instead of creating their own grassroots movements, watering down support and resources for patients like those of us with mental health struggles.

The biggest offender lately is a recent movement that has begun to try to normalize the need to take opiates and other controlled substances to handle chronic pain called #PatientsNotAddicts.

I understand the need to utilize something to share how chronic pain patients do not experience a buzz or high from these medications but instead some semblance of pain relief. I understand the need to help share that these medications allow us to play with our kids or cook or clean or go to work.

As someone who takes multiple controlled substances, I certainly know how important they are to my day and to my overall quality of life.

We forget something integral when we use tags like #PatientsNotAddicts though — addiction is a disease with clear genetic components to it. Like my invisible chronic pain related illnesses, you cannot see addiction. Like types of arthritis, addiction can affect your internal organs and skin. Like PTSD or fibromyalgia, addiction can be triggered as a result of trauma and insufficient help.

We are simply adding to the stigma facing others by using this phrase in addition to making patients feel uncomfortable enough that they leave patient communities and lose desperately needed support. At what point is it okay to take down others struggling with illness in order to make us look better? Would we allow this in, say, the fibromyalgia community if the rheumatoid arthritis community did something similar?

I’d like to think not, but I didn’t think we would have a conversation over this with addiction, either.

I have received countless messages from other patients frustrated with how this movement depicts others or themselves.

I had one patient who has faced addiction issues in the past tell me they cannot follow some of the amazing leaders within the greater patient community because these leaders share articles or pieces that make them feel like garbage. This person has had to leave groups and stop doing work on activism because they continually run into these hurtful ideas.

And that’s not the only negative aspect of these issues I’ve heard.

We need to take a note from intersectional feminism and acknowledge that we have biases. We need to discuss that these biases make the movement less relevant and more harmful in dividing the greater patient community. We need to talk about how access to care and education impact how patients are seen and heard. We need to desperately address how racism affects pain relief and the diagnosis process for many patients.

Aren’t patients with addiction issues still patients? Do they not deserve pain relief or to be included in these conversations?

While there were good intentions with this movement and others like it, they have unintentionally removed humanity from our fellow patients. We have become no better than the stigmatizing pieces that CNN and Fox News run on opiates.

I don’t know about you, but I don’t think that’s something to be proud of.

Originall published on Medium.

National Pain Strategy #ISpeakForPain

A few months ago, the Office of the Assistant Secretary for Health at the U.S. Department of Health and Human Services released a National Pain Strategy. This strategy provides guidance on developing ways to measure pain and its management, improving care surrounding pain, and increasing public awareness of pain in order to destigmatize it.

As pain patients, we know that pain affects much of our lives as well – something that others aren’t necessarily always in tune with. This strategy would help to recognize and promote that to those currently not in the know.

This would also help to lower the people who are on opiates unnecessarily and help them to gain access to other pain management fitting their pain. It is, after all, a part of the initiative to lower opiate abuse.

The National Pain Strategy is a first-of-its-kind blueprint for improving chronic pain care in America, that increases research of pain treatments, medical training for clinicians, and awareness of chronic pain as a disease of epidemic proportions. Without an outcry from patients and advocates, NPS may not be implemented or funded at all. The chronic pain epidemic must be addressed immediately by fully implementing and funding the NPS.

The National Fibromyalgia and Chronic Pain Association, along with The Consumer Pain Advocacy Task Force, have combined forces to create a petition on the White House petition site in order to ask for this to pass.

We need 100,000 signatures by August 12. As of this morning, that means we need just shy of 92,000 signatures in ten days.

I know we can do this if we all sign and share.

What can you do to help?

  • Sign the petition here and make sure to share on social media (bonus points for using tags like #ISpeakForPain!)
  • Write a blog post or record a video about it and share that!
  • Use the photo I’ve created below to share on Insta

Ensuring that this passes will make the world better and less painful for us. Let’s do what we can to make it so.