What It Means to Be 'Strong' as Someone With POTS


Today I would like to dissect what it means to be “strong.” This has been a word used to describe me by so many people since I graduated college, got POTS and went through a number of difficult trials, but it still feels kind of funny when I hear someone throw this adjective next to my name.

Dictionary.com defines strong as “mentally powerful or vigorous,” but it doesn’t offer any tips on how to be strong or what kind of trials make you strong.

I was made strong. I didn’t choose to be strong and I am in no way admirably resilient. Before getting sick I was used to a fairly comfortable life, and never in a million years thought of myself as tough or as someone who would face trials well.

Almost four years later though, here I am. I had a choice to make when I got sick. I could take what the doctors said, admit defeat and recognize that my life would never be the same, or I could fight for the best life I could possibly have. I quickly chose the latter. This involves keeping an open and optimistic mindset, being incredibly diligent with my doctor appointments, physical therapy and diet, and finally — learning how to rest.

When I first got my diagnoses I asked through tears whether I’d ever get better. The nurse laughed and told me I wouldn’t and my mind immediately went into a dark abyss, thinking about a long life of dizzy spells, fainting and feeling miserable. I was incredibly lucky to have my encouraging mother with me, who followed me to the parking lot and said the nurse didn’t know what she was talking about. She said I needed to take each day as it came to me, and think positive thoughts. To this day I believe this is one reason I am slowly getting better and have been able to make peace with my new life.

I’ve had POTS for three and a half years now and haven’t had a week off from going to visit some sort of doctor. I typically have two physical therapy appointments and either acupuncture or a massage to work on managing my chronic pain, as well as regular visits to my cardiologist, neurologist and endocrinologist. I go to the gym five days a week — even when I am feeling awful — because one of the worst possible things for a POTSie to do is get de-conditioned. My gym routine involves a short 30-minute recumbent bike ride, as I could easily faint if I am in an upright position. I get B12 shots every other week since I am deficient in it and B12 seems to be a link to chronic pain. Then I have to take a lot of time to rest so that my body can settle down a bit. I get worn out incredibly easy, and a trip to the grocery store turns into a long ordeal because of the recovery time afterward.

Lots of POTS patients develop adult allergies, so I can’t eat many of my favorite foods anymore. I have given up nightshade vegetables (potatoes are my favorite food and I miss French fries dearly!), gluten and I really limit my dairy and sugar intake. I don’t drink coffee at all, partly because I can’t have caffeine and partly because I just can’t have coffee, period, and I don’t drink alcohol at all anymore. The coffee is definitely a million times more difficult.

woman typing on computer at coffee shop

Lastly, I have had to learn to listen to my body and rest. This is such a hard thing for me to do, as my mind is incredibly active. Anyone who knew me before I got sick knows I love to work and play, so sleeping and rest were never really a big part of my vocabulary. I joke to my friends that I’m just catching up on all the time I missed in my life before, but it really is a difficult thing for me to wrap my mind around. I always have a million and one things I want to do and write about; however, my body isn’t very kind to me. Writing hurts after 10 minutes, and the dictation software I have used is grueling. I can’t sit at a desk chair very long without having a lot of pain in my shoulders, and some days I can’t stand without feeling dizzy. Sometimes all I can do is rest, and I’ve learned that it’s OK to spend time listening to podcasts and watching HGTV when I really can’t do anything else. Yes, I would much rather be working and making a living for myself. I wish I could live in New York and write for a magazine, I wish I could have a paycheck to save for a new car or fun wardrobe, but that’s just not in the cards for me right now. Right now it’s my job to focus on getting better, keep taking care of myself, and trust that God will make something beautiful out of my struggle. 

The best advice I could possibly give anyone going through something tough is to take each day as it comes to you. Worrying about things in the future that you cannot control won’t help you change them, and looking back on the past won’t make your present any more satisfying. I know what it’s like to feel helpless and I know what it’s like to feel like life isn’t fair. I have found that the greatest feeling when my world is crumbling in on me is learning to give my problems to God and let Him take care of the things that are outside my control.

If I can be strong, you can too. I’ve always thought I am an incredibly average person in most regards, which should offer an incredible amount of encouragement to anyone reading this. If I can do it, so can you.

This post originally appeared on Single in the Suburbs.

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Thinkstock photo via kieferpix.

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