Chronic Voices: Emma Smith

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Mayv Editors

What chronic conditions do you live with?

POTS, Asthma, ICP, Fibromyalgia

What’s is the most common misunderstanding about you or your condition?

The most common misunderstanding about my condition is that people forget that I have times where I feel really well and times where I feel really sick. Many people think that because I have a chronic illness, I should constantly feel sick but that is not the case. It fluctuates and can sometimes fluctuate really quickly.

What’s one thing you wish you knew when you got diagnosed?

I wish I would have know not to be so hard on my myself before I got diagnosed. I was very stubborn and tried to ignore my illness for a long time but that only ended up making me worse.

What’s the most ridiculous thing a doctor has ever said to you?

“POTS isn’t a real medical condition. That’s just what doctors diagnosed attention seeking teens with.”

What gives you inspiration?

I am very inspired by all the members of the chronic community! I have a Instagram page dedicated to my medical conditions and I’ve meet some amazing people through there! Hearing that someone has the same condition and symptoms as you makes you feel a lot less crazy and inspires me to help others who are newly diagnosed.

Tell us a funny story about when nothing went to plan…but the story is one good one to tell!

I remember I got dropped off at school this one time to take a test for my geography class. I was wheelchair bound at the time so my friend pushed me to class. We got to class, took the test, and I was the first one done. Usually my friend or classmate turns my paper in but since I was done first and less than three feet away from the “turn in” tray, I decided I was feeling well enough to stand and I walked over and put my paper in the tray.

I turned around and EVERYONE was looking at me.

I was thinking, “Oh my god, do I have a rip in my pants!?”

Then one kid spoke up saying, “Wait… you can walk!?”

I laughed and said, “Um yeah, my legs aren’t broken.”

Then a boy bursts out, “oh my god,” with his hand over his chest, “I thought I was witnessing a miracle!”

Then another kid goes, “So why the chair?”

And I then explained, “I have a medical condition that cause me to faint a lot so I need the wheelchair so that I don’t fall and get hurt. The school also requires me to sit in the chair so that they don’t get held accountable, but that’s besides the point.”

I thought it was so funny that there were kids in my class that didn’t know I was able to walk and thought that they were witnessing a miracle!

To what do you attribute your ” daily will?”

I would life keeps me going. Metaphorically and literally. Life is such a precious gift and that’s some to info I’ve really learned to appreciate ever since I’ve gotten diagnosed. Living life to the best of my ability is something I try to do everyday.

What alternative treatments or therapies have most helped you? Any that surprised you by how effective they were?

There were many traditional treatments that just didn’t work for me but I would say acupuncture, diet, and exercise really has such a big impact on how you feel. I’ve tried to cut gluten out of my diet and it’s really helped me! I also try to exercise a little each day depending on how I’m feeling. It can be walking in circles in my living room on a bad day to get my body moving or I could be doing an hour long cardio workout in a good day. You just need to know how to pace yourself and know what’s good for you body at that particular moment.

What was most challenging when you were first diagnosed?

I think the most challenging thing about my diagnosis was all the medications I was taking. They all had horrible side affects and made me feel so horrible!!!

What does your daily routine look like?

Well right now, I’ve just graduated early from high school so I have a pretty relaxing day! I wake up around 8:00 and get ready for the day. Then I eat breakfast and watch YouTube while eating. Then I begin studying for my AP tests and listen to crash course on YouTube while I organize, sun bathe, or do chores! Then I have lunch and afterwards I continue studying. Then around 3:00 I pick my brother up from school and take him home. Depending on the day I either have dance class at 5 or on a regular day, I draw for a little bit on my iPad and work on my small business until dinner! Then I get a shower, get ready for bed, and go to sleep!

How has “being disabled” changed you as a person for the better?

I learned that all disabilities look different. Just because someone looks normal, doesn’t mean they aren’t disabled. Some disabilities can be invisible and we need to keep that in mind and be a little more compassionate for one another.

What is the one thing you are MOST proud of yourself for achieving despite your condition?

So in January of 2021, I achieved one year without fainting!!!!! It’s so incredibly awesome to know I’m making progress!

What are your favorite life hacks for getting things accomplished day to day… while overcoming the fatigue, brain fog and all the symptoms?

Hydrate, hydrate, hydrate, snack! Always make sure you are SUPER hydrated and have something in your belly! Light cardio also helps me with brain fog and fatigue!

Do you have a slogan that you want to leave readers with?

Your body is worth fighting for.

How can patients find you on social media?

Personal: @ballerina_emma_
Chronic Illness Journey Account: @potsieprobs

This article is for informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek medical advice from your physician or health provider for your specific needs.

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