ISpeakOut

“There have been moments throughout my journey where I feel like I’ve been muted, and not by choice. I am a very vocal, forthcoming, straightforward person. I like to speak my truth. But I have been in spaces, particularly with dating or living situations, where I haven’t been taken seriously enough or have scared people away. I can’t wait until a crisis happens for people to understand the severity of what I’m going through. It can be challenging to power through and get to the bottom of what is going on with me, but I always try and do it. I try to give people a fair chance to make a decision about whether or not they want to enter this life with me. Because it can be a lot, it can be overwhelming. Sometimes I feel like I scare people off because I am so honest about what is happening with me. I often feel the urge to silence myself, but I don’t - because I have to let people know what’s going on.

The most important thing, and what touches me the most is when people ask me how I’m feeling. It just opens up my heart. It can be a stranger, it can be a close friend. I’ve had people who follow me on Instagram and they’ll see me out in the neighborhood or at the park and come up and say, ‘How are you feeling today?’ It’s just so beautiful. It’s such a human thing to check in on someone. We can present ourselves in such a way that makes us look like we’re okay - which is something I do regularly - and it’s hard to tell how people are doing with invisible illnesses because they are invisible. So it’s really important to check in. And when someone does it, it just makes my day.” - Devri 📸: Amanda Crommett #ISpeakOut

#CheckInWithMe #ChronicIllness #RareDisease #MentalHealth #Disability

“I have felt silenced my entire life. I have a disability that affects me both physically and intellectually, but most people don’t see it because it’s ‘mild.’ This has made me feel a lot of guilt and shame about asking for help, even though I have very legitimate needs and accommodations. As I get older, I’m learning the importance of asking for help and not feeling guilty about it.

Something that has been essential for me in order to feel more comfortable with being true to myself and my needs as a disabled person has been surrounding myself with people who accept me for who I am, both my good and bad traits, on the good and the bad days. It’s been a lifelong process that I still struggle with and I honestly feel like I’ve only just begun to make headway on it. But if you’re persistent, show yourself some compassion, and don’t give up, those people will lift you up and help you figure out who you really are, even if they don’t realize that they’re doing that.” - Sam 📸: Amanda Crommett #ISpeakOut

#CheckInWithMe #ChronicIllness #RareDisease #MentalHealth #Disability

#ISpeakOut about my health because…
I am looked at as too young. I am looked at as perfectly athletic and healthy. I am athletic and I am healthy. However, mentally, I learn more. Mentally, I fight with my own self and my own mind everyday. I have always kept to myself and now I speak more from my mind [or at least jot it down].

#Depression #Anxiety #ChronicMusculoskeletalPain #ChronicPain #SocialAnxiety #ObsessiveCompulsiveDisorder

“I was diagnosed 13.5 years ago but I feel like for a long time I kept it quiet. It’s so deeply stigmatized in American culture. Crohn’s being a bowel disease makes it very difficult to talk about. It has to do with something that nobody talks about. It’s so debilitating. A lot of times it’s mistaken for an eating disorder because our weight can be all over the place so nobody wants to ask us what’s going on because they’re ashamed to. We want to be asked how we’re feeling. Since I became an advocate, more and more people are asking. People are understanding the different nuances, the different surgeries, because I talk about it all the time.

I never realized how many people have this condition until I started talking about it. I have a lot of people all over Asia reaching out because I look like them. Just having someone who dresses like you, presents like you - makes a difference. They look to me for the Indian aspects, the Pakistani aspects, the Middle Eastern aspects of this disease. There’s a lot of cultural issues that go into it - how do we talk about this disease and all of its nuances if even our friends don’t get it and we are afraid of being made fun of for our bathroom issues? You’re not supposed to have kids because you have disabilities. People just assume that just because you have a disabled identity, there’s no sexuality. There’s no marriage ability to a person, you don’t lead a normal life. You do, you do. People ask, ‘How can you still get married?’ Be honest from the beginning, talk about it. If they don’t accept you, they’re not the right person for you. It is possible and it does empower people to see that.

I also have an ostomy bag and that adds a whole other layer of silence to all of it. Having a fistula, I’ve had several of them. I put out articles on that - my experience, the psychosocial aspect, the impacts on our marriage. These are really taboo subjects but people have to talk about it. We suffer in silence but I think you’re allowed to have an identity of suffering and of disability and be allowed to commiserate with other people and support other people and empower them at the same time. I think there’s beauty in imperfection and I think that needs to be highlighted.” - Tina 📸: Amanda Crommett #ISpeakOut

#CheckInWithMe #ChronicIllness #RareDisease #MentalHealth #Disability

“When people think of depression, I think they often assume people have had traumatic experiences to cause depression. I come from a great family. I was always loved and supported — I was basically a spoiled kid growing up. But that didn’t stop me from struggling to get out of bed every morning. From having such extreme anxiety that it feels like the ground is cracking underneath you every ten minutes. People assume that if you have everything, that means you can’t suffer from depression. It’s like — I didn’t fit the protocol or something. And especially as a kid, that made me feel like I wasn’t allowed to struggle with this.⁣
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The heavy metal community has been so helpful for me. I stumbled into this heavy metal bar in 2016, and it was the first time I was surrounded by people who understood me. It was the first time I felt welcomed and not judged by my experience. These people didn’t care how or why I was depressed, they just cared that I was and they were there for me. I’m a journalist in music now, and just doing an interview with artists from the community and seeing how they use music to combat their demons is so helpful, seeing how these people you idolize are not that different from you. So many people are dealing with this, even if we don’t assume they are.” - Alexander 📸: Amanda Crommett #ISpeakOut

#CheckInWithMe #ChronicIllness #RareDisease #MentalHealth #Disability