5 Things to Expect After a Chronic Illness Diagnosis

A chronic illness diagnosis can come with a rollercoaster of emotions.  Relief that you finally know what is wrong.  Excitement for potential treatments.  Fear as you realize this means you’re not going to be “normal” ever again (what is normal, anyway?).  

Then there’s the part where no one understands what you’re going through, but you’ve been dealing with that since the beginning anyway.

Getting a diagnosis of postural orthostatic tachycardia syndrome, or POTS, will run you through all those emotions.  On average, it takes being seen by nine different doctors before a diagnosis can come.  You’ve just been diagnosed with a chronic illness.  Now what?

Here’s a crash course on what to expect after your initial chronic illness diagnosis.

1. Grief.  It’s normal to feel some level of sadness and grief over the life you thought you would live.  Especially when you’re staring down a list of symptoms that make you wonder how anyone can manage moving forward.  It’s okay not to be okay.  It’s okay to experience this grief.  So let yourself feel it.
2. Judgment.  People often cannot understand what they can’t see.  You look healthy.  Surely you’re not sick.  As you disclose your diagnosis to friends and family you may find some people's reactions surprising.  Be aware that they may not understand.
3. Getting salty.  One of the biggest management symptoms for POTS is to increase salt intake.  Salty snacks, salty foods, salt tablets, and electrolytes.  Keep in mind that not all electrolyte drinks are created equal, and we recommend using a medical grade electrolyte.
4. Compression socks.  Your wardrobe may change a bit.  And while buying compression socks may make you feel like you’re 90 you should know that there are some seriously adorable compression socks made for the younger crowd.  
5. Finding support.  There are many great support groups specific to your diagnosis.  The way you’re feeling right now… someone else has been right where you are and they’re willing to provide you with a listening ear.

While you are learning to cope with your chronic illness, know that there are resources available to you.  We recommend visiting the Dysautonomia International website to find a specialist that can support you through this new life.  In the meantime, know that you will find your normal again.

What are some things you experienced after your initial diagnosis of POTS?