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When My POTS Anxiety Prevents Me From Responding to Messages

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My phone buzzes once. Twice. Three times. My heart beats quickly as I wait for the buzzing to stop. I look down- four missed calls, two voicemails, five emails, and seven Facebook notifications. A wave of anxiety rolls over me looking at all the things I have missed, and I feel overwhelmed. What if the missed call was a doctor with bad news? What if my Facebook messages are friends who need advice I can’t give? What if I forgot something I was supposed to do? I haven’t checked my messages in days, what if I missed something, what if someone is upset I didn’t answer their call? What if, what if, what if. The stress takes over, and even though I know none of those things are likely, I put my phone away.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

Over 40 million American adults are affected by anxiety, and it can be caused by a multitude of things. People see counselors, practice meditation, take antidepressants or anxiety medication or do whatever they can to help manage the symptoms. I struggle with the general anxiety and depression that often comes along with being chronically ill, but I also have another type of anxiety.

I have a condition called Ehlers-Danlos syndrome, which can come with many different comorbid conditions. One of those conditions is called dysautonomia. I have a type of dysautonomia called hyperadrenergic postural orthostatic tachycardia syndrome (or hyper-POTS). This syndrome causes many symptoms: nausea, dizziness, fainting, fatigue, migraines, brain fog, palpitations…and severe anxiety. Many people with POTS are in fact misdiagnosed with anxiety disorders first, as the symptoms are so similar.

Hyper-POTS can cause something called adrenal fatigue. This condition can cause your body to not produce enough of certain hormones, which we rely on to physically handle stress. These hormones also control your fight-flight-or-freeze response, so when it is out of balance, it makes you feel on edge all the time.

It is so hard to manage the symptoms of anxiety when you have these conditions, as traditional medications often don’t help, and talk therapy does little when the problem is a physical response in your body. When you couple the POTS anxiety with the problems faced by many with chronic illnesses – isolation, depression, anger, frustration, disappointment, physical pain, coping with the “sick” feeling all the time, managing doctors, medications, treatments, the constant uncertainty of how each day will go and trying to participate in “real life” – it can all be overwhelming. Overwhelming to the point you are frozen. I feel so frustrated with myself when I am overcome with anxiety, and guilty when I ignore and shut out the ones I love. And each day I ignore the things that are causing anxiety, they build up and the anxiety worsens. Sometimes it can take a week or more to come out of an episode. To start to function. To feel OK again. To breathe.

So, I am sorry I didn’t answer my phone. It isn’t because I don’t love you or don’t care. It isn’t because I am mad or upset. I’m sorry I ignored your Facebook message – it does matter. It doesn’t mean you aren’t important to me. I hope you can understand that every day I am doing the best I can. It’s just that some days, pushing through is easier than others, and I am learning new ways of coping all the time.

So on my bad days, please love me and be patient. I just need some time and space. Know that good days are coming, and know I love you.

Thinkstock photo via Ridofranz.

Originally published: March 31, 2017
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