I see that you’re a chronic illness advocate. Could you tell us what got you interested in the subject?
As someone who was born with a very rare chronic illness (Chronic Intestinal Pseudo-Obstruction, or CIP), I’ve personally faced a lot of stigma throughout my life. CIP is an intestinal motility disorder, meaning my intestines are extremely uncoordinated due to a disconnect between my nervous system and my digestive tract. I’ve been on an all-liquid diet for my whole life and I receive all of my nutrition through two feeding tubes. After I was born, my doctors told my parents that I would likely die before turning 1 year old, but now I’m about to turn 20! They said I would never walk, and now I’m a dancer! I go to college, I have amazing friends, and I live a fulfilling and independent life despite my complications. Therefore, I want nothing more than to spread the message that chronically-ill people are entirely competent individuals who deserve to be treated with the same dignity and respect as everyone else.
What facts or misconceptions do you believe are important about chronic illnesses?
There are way too many misconceptions and stigmas for me to even discuss here, but I can go over some of the ones that i found most important to address and oppose:
- I’ve faced a lot of accusations about “faking being sick” from people who don’t know me. The reason for this is because CIP is what is called an “invisible illness”. There are no major physical signs of CIP, except for my feeding tubes which are both hidden under my clothes. There are many, many people in the world who have invisible illnesses and probably face the exact same accusations. It’s wrong to boil down chronic illness to something that can be detected by looking at someone. It’s wrong for there to even be a standard of what disabilities or chronic illnesses are “supposed to look like”. Just because someone isn’t in a wheelchair or exhibiting some other visible indicator, that doesn’t mean they aren’t chronically ill. In fact, I can guarantee you that most of us are faking being well so that we can keep up with the rapid pace of life!
- Just because chronically-ill people do things differently or maybe might not be able to do everything you can do, that doesn’t mean we need or deserve pity! Whenever I tell people about my chronic illness, the most common reaction is deep sadness. I want people to know that just because our lives are different from yours, that doesn’t mean our lives are sad! Sure, we may have parts of life that are less than ideal, but we have plenty of good things in our lives as well.
- Some people ask extremely invasive questions that are, quite frankly, none of their business. I want to first make it clear: I have absolutely no issue with educating people. I’m actually happy to do so! The problem when it gets taken a step too far. Some of my own personal examples are things like, “Can I see your tubes?” or “Is your CIP the reason why you’re so short?”. Instead, ask politely-framed questions that will help you become more aware of the condition, and don’t pry if the person you’re asking appears uncomfortable or asks you to stop.
- Chronically-ill people are not fragile! We are very strong and competent people who just want to be treated like everyone else. I appreciate polite concern, of course, but people should not feel the need to hover over someone just because they are chronically-ill. Chronically-ill people do not want to be defined by their illness, but rather, they want to be given room to make their own decisions and show off their own potential.
- It is wrong to call a chronically-ill person lazy just because they express that they are tired or struggling. In reality, chronically-ill and disabled people are the farthest thing from lazy, having to navigate a world that was not built for them. We power through major pain, fatigue, and other symptoms every day so that we can live life alongside everyone else!
- Finally, I think it’s important to notice and call out insane double standards for chronically-ill and disabled people. For example, when we choose to express our sexuality, we are reduced to a fetish. When we are successful, it’s because we “got it handed to us”. It’s absolutely ridiculous! People with chronic illnesses and disabilities are no less of a person because of it; we work hard, we have fun, we achieve greatness, we have sex lives and friendships. We are human!!
I also learned that you are an aspiring author and poet. What are some practices you recommend doing when faced with writer’s block?
Yes! I love to write more than anything else in the world. Poetry is a huge coping mechanism for me, a way for me to take heartbreak and struggle and make it into art. Fiction writing is a way for me to create and tell stories that are not only important to me, but that I hope will resonate with others in a big way.
One of the things I love to do to get my creative juices flowing is to go out in public and just experience things. Go to a park and sit on a bench. Take note of the scenery. Look around and absorb the atmosphere. Be observant everywhere you go: school, work, the grocery store. Everywhere. I think writing what you know and writing with the senses are two really great practices, and this method combines both. I love to pull from personal experiences, whether that’s in the past or present (or hopes for the future), big or small. I also recommend bringing a notebook, tablet, computer, or something else you can use to jot down ideas with you everywhere. This way, when you get inspiration, you can just run with it without running the risk of forgetting anything!! Remember to trust the process and don’t force creativity; the best ideas come naturally.
Do you believe in reading therapy? Furthermore, has reading and/or writing helped you with your own mental health in the past? If so, why do you believe that it helped?
Yes, I do! One of my primary forms of self-care is reading for fun. Reading helps me to distance myself from my stresses and problems for a little while by joining a fictional world. Sometimes, learning can even help you learn something new about life/yourself or make you feel less alone by introducing you to a character or plot line that you relate to. Writing, as I mentioned earlier, has been crucial in maintaining my mental health. Creative writing has helped me by giving me an outlet to channel my thoughts and feelings into something beautiful, creative and long-lasting; something that I am proud of and that can be shared with the world and potentially help others.
What would you say to your younger self?
In the shortest terms, I would tell her that it gets better. I know that sounds vague, but I think that I needed to hear that more than anything. My CIP had such detrimental effects on my mental health as I grew up. I was isolated from peer groups a lot, which caused me to develop bad social anxiety. My tubes and scars altered my body shape and resulted in body dysmorphia. I also struggled with depression in middle school and early high school due to social isolation, bullying, and a belief that my life would never be “normal” or “like everyone else’s”. I felt like I would never find friends or happiness, but now, I have.
How has the pandemic affected you mentally?
During the summer months of 2020, practically all of my mental health problems came back in full swing. I started feeling more anxious in social situations because I fell out of practice with socializing, not being able to see and talk to people at school every day. I felt extremely depressed and unmotivated most days since all I was doing was sitting at home. I also experienced a lack of physical activity because I wasn’t able to walk around and work out as much, which led to a relapse in my fixation on my body. Most of these things, thankfully, have gone by the wayside since I’ve been in school again. Bottom line: this pandemic has been so rough on everyone, and we need to remember to be kind to one another.
What are the most beautiful things about life to you?
Another difficult question, because I think there’s so many things about life that are beautiful and worthwhile. Some things that make my life worthwhile and beautiful are: poetry, books, random acts of kindness, music, art, meeting someone and having an immediate connection, deep and passionate conversations with someone you love, rainy mornings (light rain, not scary rain!), pets/animals, hugs, the feel of a warm blanket, long car rides at night, spontaneous side trips, trying new things. The short answer: all the little things and little moments… Those are always the most significant.
What does mental health mean to YOU?
To me, mental health is not about having the most perfect life. It’s about knowing how to cope and continue living life to the fullest even in the darkest of times. It’s about always knowing your worth, your beauty, and all of your good qualities even when other people (or just life in general) tries to tear you down.
Is there anything else you’d like to tell Revive’s audience?
First of all, THANK YOU for taking the time to read my story and for listening to what I have to say! It’s been a true pleasure. I also just want to remind you that you are worthy, you are loved, and you are beautiful even if it doesn’t feel that way right now. Remember to be kind and patient with others. And finally, remember that I am proud of you for being you and for getting up and living life despite all of your circumstances. I promise your struggle will be worth it in the end. Life is worth it.