The 'Hurry Up and Wait' Process of Chronic Illness

They always say “Patience is a virtue,” but for someone living with an invisible illness such as my dysautonomia/postural orthostatic tachycardia syndrome (POTS), it is something that is hard to come by at times. Part of it may be society today — we are a “I want it now” society in general, but when you are not feeling well it can be difficult waiting for the day that I am going to feel at least better.

For me, medication and medication changes challenge my patience. It often takes months to find the exact dosage of medications and much tweaking before you find the perfect amount your body wants to make the correct changes to your system. Is it perfect? Definitely not, but sometimes our goal living with a chronic illness is just to feel better than you do. I dread the news of a new medication! How will it affect me? Will it work? How long will it take until they find the proper dosage?

We, of course, have many other aspects of chronic illness in which patience comes into play. How many hours have we waited at a doctor’s appointment or waited to get an appointment with a doctor? How many of us really want to do something, but have to wait for a “good” day to do it? For me every morning requires patience waiting for my morning meds to “kick in” so I will be able to function. Yes, it is a hurry up and wait process.

Some people may be more genetically predisposed to having the ability to be patient more than others. Some people’s tolerance for feeling crappy or in pain may be stronger than others. Others must find ways to gain the patience they don’t naturally have. So what can you do to gain this patience? I will share a few things that I do which may work for some and not for others.

Have faith! If it helps you, draw on your higher power for comfort and hope. I find a daily devotion that seems to put things in perspective or at least give me something to think about.

Keep busy! I find this the most helpful. I busy myself with numerous little “projects” to keep my mind occupied and make the time go faster. They don’t have to be big things, just something that keeps you from thinking about the other things you don’t want to. It could be a book, a crossword puzzle, making lists of things to do when you feel like it, watching a good documentary, movie, or TV show, listening to music, or a hundred other little things.

Find some kind of hobby. I am naturally a collector so I enjoy my collections of various things, organizing them, reexamining them, or hunting for new things on the internet. Find something you enjoy and that takes up a little time.

Have a support network. Talk to friends or family. Keep active on social media or in person. Sometimes it feels like we are locked in our own small world. We have to find ways of interacting even if we can’t physically be out there doing all the things we wish we were.

Lastly, try and find pleasure in the small and the simple things. Get outside in the fresh air. Find beauty in nature and small gestures, give out kind words, do what you can for others. Things have a way of returning to you.

I know this small article may be of very little help, for all of our “patience” reserves get depleted at times! I guess when that happens all we can do is “hurry up and wait!”

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by SIphotography

Find this story helpful? Share it with someone you care about.

Related to Autonomic Dysfunction

woman's hands turning pages of textbook

When Your Illness Can't Be Found in a Textbook

I have a very rare form of autonomic dysfunction that affects my HCN channels in my brain that makes my autonomic nervous system (ANS) prematurely age. My ANS is equivalent to a 60-year-old’s stuck in a 20-year-old’s body. Never heard of this? Neither had I. I was always told I had autonomic dysfunction but they [...]
"Three doctors outdoors, focus on female doctor, close-up, profile

What It Was Like Going to Doctors With Undiagnosed Subacute Combined Degeneration

“You have a mild mood disorder,” my hematologist/oncologist said. “You know PTSD could cause physical pain, right?” said the rheumatologist. “I believe this is an autoimmune issue,” said the gastroenterologist. “There is no indication that this is autoimmune. It’s time you see an infectious disease doctor,” said a different rheumatologist. “Blood results are normal. Maybe [...]
Young couple in love walking in the autumn park holding hands looking in the sunset

So You Want to Date Someone With Chronic Illness?

Here are some words of wisdom from a sassy someone diagnosed with autonomic dysfunction, postural orthostatic tachycardia syndrome, asthma and benign joint hypermobility syndrome. I felt inspired to write this list after dealing with the pain after a few relationships ended due to a misunderstanding of chronic illness. I’m constantly seeing this frequent occurrence in support [...]
Young woman lying down on the bed in fetal position

Reframing Chronic Illness: When My Body Wrote Me a Love Letter

​Pain. Insidious. Fatigue. Intolerable. Thirst. Unquenchable. So dizzy, I walk like I’m on a ship listing to the right. This is my body writing me a love letter, although that is not what I told myself or anyone else for a very long time. My body is betraying me, I said. Out loud. Numerous times [...]