By: Nicole Chedraoui
This year, 2022, will mark the fifth year of my life that I’ve spent battling my chronic illness, Postural Orthostatic Tachycardia Syndrome (POTS); and in honor of this thrilling anniversary, I found it only appropriate to touch on the anomalies that are invisible illnesses. Illnesses such as my own are funny, for someone may look at me and assume I’m a perfectly functional, capable, active 18-year-old, even if in reality I couldn’t walk to my kitchen table that day. Because of these presumptions, sometimes the people around me find it imperative that they give out their unsolicited medical advice and expertise. They’ll give their mom’s uncle’s son’s opinion on the way I (and others with my illness) should go about life. I know that so many around me truly do have their best intentions at heart and genuinely only confide in me out of love and concern, however this article isn’t about those people. NO, this article is based off real life interactions and experiences I’ve had that left a sour taste in my mouth. Today I want to bring to light some of the things I’ve been told in hopes that others will listen with an open mind.
- You’re Too Young To be Sick!
If I had a dollar for every time those of an older generation scolded me for “not taking advantage of my prime,” or “exaggerating” pain simply because of my youth, I would have befriended Bezos AGES ago. The immediate correlation many make between the concepts of adolescence and health are astounding; after all, society told us this is supposed to be the prime of our life! When I was first told this, I laughed and gave a shoulder shrug; I took such invalidation of my symptoms as perhaps a funny joke or as light teasing. It was after the third or fourth time someone over the age of 50 told me “you’re the healthiest now you’ll ever be,” that I finally became enraged. I then had to have a mature and empathetic conversation reiterating the validity of my problems and further explain how my life was quite the opposite. Like lots of adolescent illnesses, this is a disability that most will grow out of. Disability has no timeline!
- You’re Lucky You Don’t Have to Go To School/Work!
When I was forced into a position of having to quit my job and begin doing school from home, the last word I would’ve used to encapsulate the experience was “lucky.” As Covid taught every single one of us, at-home school is a nightmare. However, this time, it was a nightmare but with no teacher instruction. I had no choice but to get my work picked up every single day and teach myself the content of all of my classes. Most of the time this was from my bed which I wasn’t physically able to leave in days. Weeks of isolation and immobility leave the mind uninspired and anxious, and it wasn’t two weeks in before I was craving to be sitting at my wobbly desk surrounded by familiar faces. I don’t mean to make this a pity party, however, I do mean to stress the absolute ignorance in reiterating such a phrase to someone locked inside the constraints of at-home living. I must say that I do entirely understand the sentiment behind this, in fact, I bet 2017 Nicole would have said the same thing, heck, school is hard! Work is hard! Getting up early is hard! But it isn’t until that privilege is taken away from you that you realize how much you miss it.
- You Take Too Many Medications!
I will never forget the day I invited one of my good friends over into my room and realized I forgot to hide my bucket of medications. Yes, I have a medication bucket that lays on display 99% of the time. At first glance, many would either assume I had a drug problem, or I was running a mini pharmacy–neither of which are true. The point is, the face of bewilderment I got that day haunts me in my dreams; the look of pure shock and revulsion painted on her face stuck with me. Over my years of visiting dozens of specialists, it’s safe to say I was prescribed an ungodly abundance of medication for every bodily system–just one of the perks of a nervous system disorder. What I’ve learned about illnesses with little to no research is that their #1 solution is to throw medication at the problem. Sometimes two, sometimes three, sometimes four times a day, sometimes only on certain days. No matter the problem, there was always a medication they had to prescribe.
Don’t get me wrong, modern medicine is a miracle, and those who work in the health field researching, creating, and prescribing these life-changing substances should be given all of the praise and credit in the world. However, years of bouncing between medications has shown me that sometimes maybe these medications aren’t always the answer, So you can imagine when a middle-aged woman holding a bottle of essential oils told me to stop taking my beta blocker, I was slightly peeved. My heart medication can take my heart rate from 200 to 100, one pill per day, and while I love a good lavender oil, I can’t say I’m as firm of a believer. However, the point of me even mentioning this is to say: It’s not your place to comment on what a chronically ill person chooses to take during their treatment, for that decision is between nobody but the patient and their doctor.
- You’re Probably Just Stressed
TRANSLATION: “You’re probably just bringing this on yourself,” i.e, this is all YOUR fault. This statement is a classic example of the blame-game phenomenon, a classic instance of medical gaslighting, which, from experience, usually comes from doctors when they realize they can do nothing else to help. Eight beta blockers later and a criminal amount of vitamins, you can bet my cardiologist had to find somebody to blame. It’s always, “perhaps you may not even know you’re doing this to yourself,” and never “how best can I support you?” While mental health can absolutely present itself in physiological ways throughout the body, anxiety is a great safety route many like to take. Of course stress may exacerbate anybody’s symptoms, but the amount of times a rare nervous system disorder gets labeled as “Generalized Anxiety Disorder” is as astounding as it is disappointing.
- It Could Be Worse
I decided to end today’s article on an absolute classic: the ignorant practice of classic invalidation. If you are the type of person who has to “one up” another person in every aspect of life, this is your sign to stop. Imagine you’ve had the worst day of your life, you’ve broken up with your significant other, got yelled at by your teachers, failed a test, and you come up to your friend to vent about all of your problems, only for her to say; “Yeah well my dog died– suck it up.” You would never do that! And if you WOULD do that, for the love of god, PLEASE STOP DOING THAT. Belittling and invalidating somebody else’s problems doesn’t make yours any more valid! Nervous system disorders range from simple tachycardia to fatal diseases like Parkinsons and ALS. We all struggle, and every struggle and hardship somebody with a chronic illness faces should be validated.
In conclusion, if you have a family member or friend who suffers from a chronic illness, I hope you could possibly take something away from this article, even if it’s just taking a few simple phrases out of your vocabulary. Instead of belittling or invalidating someone, perhaps ask how you can help. Asking things like, “I’d like to better understand what you’re going through, and I’m here to listen if you’d ever like to share,” can go a long way.
To read more about POTS and donate to the research for a cure, check out this link below!