I feel like there's this pressure to become an activist once you become chronically ill. It'll only take you a few minutes in a Facebook POTS support group to hear all about the amazing turqouise cupcake sales, walk-a-thon's, and awareness events out there donating money to Dysautonomia research. I'm so glad someone's doing these things because no one person could do it all and POTS is a condition desperately in need of awareness.
I felt a lot of guilt accompanied by this sense of moral obligation because I didn't really want to do those things. I felt like I should want to do those things because, afterall, POTS research is terribly underfunded. But it all sounded exhausted.
Don't get me wrong, as soon as I got diagnosed with POTS I wanted everyone in my life to know everything there was to know what POTS was. I posted pictures on Facebook about POTS and even created my Instagram account to update my friends and family. But I didn't want to spend all of my limited energy educating people about POTS.
And guess what? That's enough.
Really. You don't owe anyone anything. There's this weird pressure to "overcome" our illness by being the poster child for strength. This poster child will have a turquoise shirt on, all smiles, helps arrange Dysautonomia awareness events, and is known for their warrior spirit. I'm not this person.
Those people are amazing and I owe a lot to all of the POTS fighters and their loved ones for spreading awareness, getting media attention, and organizing fundraisers that benefit us all. But those aren't the only ways to spread awareness.
When I first got sick all I was trying to do was survive. I was torn between a deep passion for wanting people to know about the debilitating nature of POTS and not wanting to talk about POTS 24/7 and just try to live a normal life; in fact, I still find myself torn sometimes. I originally made my @StrongerThanPots Instagram account to update my friends and family on my health journey and to post a couple awareness pictures here and there. I never would've imagined that it would become what it has! I've found myself in a place of spreading awareness about POTS to a large audience but I didn't intend on getting here. I absolutely love this outlet for spreading awareness and think it fits my personality best. However, the little things I do in my day-to-day life to try to spread awareness about POTS are just as important.
We're tired, we're sick, and we just want to survive. We want other people to know what POTS is and we feel guilty for not being "better activists"; but the truth of the matter is, that the day-to-day ways in which we show up and unapologetically exist spread awareness in the most authentic ways. It's an added bonus that these things don't require a lot of energy either:
1. Unapologetically live as a person with a chronic illness. Exist in a world designed for healthy people and don't apologize for the things you can't control. I once saw this Tumblr post (shared on Facebook as I no longer have Tumblr) that talked about how their new year's resolution was to start saying "thank you" instead of "sorry" when something isn't their fault. I've made an effort to adapt this mentality as well. I still apologize if I made plans with someone and have to cancel due to my illness, but I have made an effort to stop over-apologizing. I would often say "sorry I'm not as fun today" and stuff like that. When you say "thank you for your patience" instead of "sorry it's taking me long to get up these stairs" you also place the emphasis back on how they're accommodating you, instead of pitying yourself. Plus, we do not need to apologize on behalf of our illness.
2. Fight internalized ableism. I often get messages from people saying that they feel bad because they don't want to tell their coworkers or acquaintances about their illness. They feel bad because they feel like they "should" tell them (in an effort to spread awareness) and "shouldn't" feel ashamed. I really relate to this. I think it's important to remember that both healthy people and people with disabilities were socialized into a culture that values productivity at the cost of valuing the lives and contributions of those with disabilities. Those who experience oppression in its various forms (sexism, racism, homophobia, etc.) are still socialized into these values and beliefs from a young age and therefore have a lot of internalized self-hatred. We feel like we "should" be doing more, and feel guilty for every possible way our illness affects us. If you don't want to tell your coworkers about your illness, you don't have to! I don't tell everyone about my illness right away either because I don't believe it's always relevant. We need to give ourselves grace in this journey and remind ourselves that we don't have to do anything when it comes to fighting for awareness for our illness. Unlearning internalized ableism helps spread awareness because it will help you no longer see yourself as a burden or over-apologize for everything you do, and therefore, other people will adopt the wording you use to describe yourself. Unlearning internalized ableism is an exhausting job and I'm on this journey together with you!
3. Refer to your illnesses by name in conversation. I often find myself saying "my health conditions" or "my genetic condition" when talking to people about my illnesses. However, I've realized the power in calling the beasts what they really are! For one, it teaches other people what the name (so if they watch Grey's Anatomy one day and hear Ehlers-Danlos Syndrome being talked about, they'll remember "oh I met someone with that!" for example) which is extremely helpful for awareness purposes. For another, I feel like when I say "oh my health conditions.." it's often because I don't want to bore people with the details. I've realized that healthy people are very aware of Cancer, Diabetes, Migraines, etc. for many reasons and one of those is because people don't refer to them as just their "health issue."
4. I take my meds in front of people. When I first got sick there was a temptation to hide my meds when I was taking them. Now I take them out and even put them beside my laptop on my desk in school sometimes (as pictured above). Destigmatizing medications starts with unapologetically taking them in public.
5. One of the best purchases I've ever made is this bumper sticker. I have a "handicapped parking spot" that I used to need all the time but now only need at my school. The parking lot is huge and if I don't get a spot up front then I could have to walk 40 minutes to get to class and that's not an option for me. I was always worried about people harassing me for "taking my grandma's pass" or whatever ignorant excuse they'd come up with. I didn't experience any traumatizing episodes of harassment before getting this bumper sticker, but I did have many people (elder people included) ask me if the pass was "really mine". This made me not want to use my pass and even wait in my car until no one was around to leave the car. How ridiculous that we have to go to such extreme measures to use a pass the government deemed us worthy of having! Since this bumper sticker I haven't experienced any harassment. In fact, I've noticed that when I'm stopped at a red light, people will squint their eyes to read my bumper sticker. So it's doing it's job at spreading awareness all the time! I've personally never seen anyone else use a bumper sticker to spread awareness about invisible illness in all my years of driving!
6. Rate businesses accessibility and accommodations on Yelp. If you've had a really great or really bad experience with certain businesses, taking a couple minutes to share your experience ensures that the business and other reviewers will see the perspective of someone with a chronic illness. This gives a voice to the experiences of those with chronic illness in a very public domain. I've also heard that an app like Yelp is going to be coming out specifically for the purpose of rating the accessibility of businesses. I'm really excited about this as I've thought it should be something for quite some time now! This is a necessary step in the right direction to hold businesses accountable, but I also think Yelp is a great way for other able-bodied reviewers to hear your experience and perspective.
7. Think of clever things to say to well-meaning ignorant comments. We've all heard them. They range from "just think positive," to "at least it's not cancer," to "ahww pooooor youuuuu." I don't experience these a ton nowadays but I remember when I first started experiencing them I was always too shocked to reply. If you come up with responses to these sorts of things ahead of time that allow you to spread awareness, keep your cool, and be respectful in a memorable way, that's huge. For example, once someone told me to "just think positive" and I said "honesty about my experience isn't negativity and positivity won't cure it!" These things can be scary to say but they make a huge difference. If you think of what to say ahead of time, it won't be as scary to actually say. I often turn them into a joking/sarcastic comment so they're still perceived as light-hearted but still get my point across. Not everyone is open to constructive criticism but I know personally I have been really thankful when people have called me out on my ignorance. For example, I was once speaking to someone online and said "trans*" and they told me that the * was actually ignorant as it was originally used to exclude non-binary folks. I had not known this but the fact that they called me out in a straightforward way makes me remember never to do that again!
Learning to say "actually, current research by ___author___ shows that exercise can not cure POTS" (yes, know the name and author of the study because the best way to shut up an ignorant comment is to FLOOD them with information that makes them realize they have no idea what they're talking about) in response to "have you tried exercising/yoga/etc.?" has actually been huuuuuuuge for me. You will never hear that comment come out of that person's mouth again, and now they realize that they don't have all the answers to every health condition.
Educating yourself on your illness and being able to communicate that education strategically is crucial.
8. Print out a flyer about Dysautonomia or a brochure for doctors and leave it at your doctor's office. Dysautonomia International has some great ones. If your doctor's office has a bulletin board you can pin it up on there, or leave it on a table in the waiting room. You put the information out there and hopefully it will land in the right hands!
9. The most natural and effective way I've found to spread awareness for POTS is to talk about it. Those with chronic illness often don't want to be seen as attention-seekers and are far too familiar with how quickly healthy people get overwhelmed or annoyed with us talking about our health (we all need friends who don't do this though!!). However, if we nonchalantly bring up little things about POTS here and there, I've noticed that acquaintances remember it a lot more than when we the important details are stuck inside a rant. We need our friends and family who we can talk to about the realities of suffering this chronic illness entails, but I don't hide the day-to-day stuff POTS impacts. For example, if I was meeting an old friend for coffee, I wouldn't feel comfortable sharing every detail about my journey with them, but I might say something about how often I have to go pee because of POTS, or how much water I have to drink because of POTS. Now this person knows a tiny little bit more about POTS than they would have otherwise, but the conversation still isn't about my suffering or my illness, as not everyone has earned the right to hear every detail about our story.
10. Use the hashtags #doctor, #doctors, #nurse, #nurses, #premed, and #medstudent when posting an awareness post on Instagram. When I do this I all of a sudden get tons of doctors following me (who don't unfollow me immediately after haha). There's a whole doctor, nurse, and med student community on Instagram and if you get them to see just one of your posts, you've educated a person who can make a difference from the inside. I don't do this for all my posts but I do it for ones that I feel are especially essential for the medical community to see.
Do you have any other simple, low-spoon ways you like to spread awareness about your conditions? If so, let me know in the comment section below!