The Advice I'd Give Myself During My POTS Diagnosis

Being diagnosed with a chronic illness such as postural orthostatic tachycardia syndrome can throw you into a whirlwind of emotions. At first it feels like a huge relief to be able to put a name to all of the symptoms you have been feeling for the last few years, but as you settle into this diagnosis, you soon realize that having a name doesn’t mean there is the quick, easy or painless cure. Reflecting over the past year, since the time of my diagnosis, there are a few pieces of advice I would give to my former self – or to anyone who has recently been diagnosed with a chronic illness.

Learn to accept that this is the position you are in now, but that it is not permanent. Nothing is put in your way that you can’t overcome.

There are going to be days where you want to give up. Days where the pain is just too much. You will be tired of living in a fog. You’ll want to throw in the towel because you wonder how you will live the rest of your life feeling this way, but don’t. The sun will set on those days and it will rise again with another chance to fight back. This is not your forever.

Don’t let the fear of your own body failing you stop you from taking risks. Book the flight to the music festival even if you think your body cant handle it. Take the job where you will have to push your body to its limits because it’s your dream job, and nothing is going to stop you from taking that. When you aren’t sure if your body can endure whatever risk you are considering taking, say yes. This will prevent you from having to sit back and watch your life go by wondering “what if.”

But on the flip side, know when you need to listen to your body. When it’s screaming, “Give me a break!” take that break. And don’t feel ashamed when it feels like you are giving in. Sometimes you need to give in. You are chronically ill after all.

Learn to love “me time.” Often times it will be the only way to reset and replenish those spoons. Even though being alone with your thoughts can be one of the most difficult things, you will learn in time that this time alone is crucial for your mental and physical well-being.

Find yourself someone within the spoonie community to be the one person that you can text every time you feel like dirt or when you experience a new symptom that you have no idea how to deal with. This person will help you get through your darkest days and will understand you better than anyone else does, because they live through this everyday just like you. This person will become one of your best friends.

Not all places that once were accessible will be accessible to you anymore. There are too many places that are not handicap accessible and some days those four flights of stairs to get to the rooftop of your favorite restaurant will be too much. That’s OK. Eat on the first floor and try again next time.

Never judge a book by its cover. You never know what others are going through, so always be sensitive to people. Don’t stare when you see someone who “doesn’t look sick” being pushed around in a wheelchair. Don’t question people who take the elevator up one flight of stairs. There is no such thing as looking “too healthy” to be sick.

Be your own advocate. Don’t let doctors tell you that there’s not something wrong when you know that there is. You know your body better than anyone so fight for that blood test. Insist on getting that MRI. Suggest medications that you have researched that you think might be your answer to feeling better. Don’t take no for an answer. If a doctor tells you “no,” find another one. You deserve to have your health in the best hands so don’t stop until you find that.

And most importantly, lean on your friends and family. Remind yourself daily of the support system you have and never feel like a burden. They may not understand exactly how you feel but they want to be there for you so let them.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “HOME” to 741-741. Head here for a list of crisis centers around the world.

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