5 Things Your Friend With Dysautonomia Wants You to Know

Dysautonomia. Maybe you’ve heard of it. Most likely you haven’t… but today I am sharing the top five things this cold and constantly dizzy friend of yours wants you to know.

Let’s look at what dysautonomia is. “Dysautonomia” is somewhat an umbrella term to describe dysregulation of the autonomic nervous system. The autonomic nervous system unconsciously regulates many bodily functions such as heart rate, breathing, digestion, and many other responses your body has that you just don’t have to think about. For this reason, I’m reminded of a phrase I’ve heard and share when someone tells me they met a person on the autism spectrum: “When you meet someone with autism, you’ve met one person with autism. No two people with autism are the same.”

I have found this to be true with dysautonomia as well. I have met so many other people, primarily women, who have postural orthostatic hypotension, or POTS (with or without mitral valve prolapse), neurocardiogenic syncope or other “forms” of dysautonomia who have such a myriad of symptoms that while we may share some commonalities, our journeys look very different.

This post is about my personal journey and the symptoms I struggle with most, including why you might see me in fleece in the summer and how my lips are not purple because I’m into that shade of lipstick.

1. Yes, this diagnosis came out of nowhere for us, too. And newsflash… we are struggling to understand it just as much as you are.

For me, when I look back on the years prior to my diagnosis, I can see little signs and symptoms that probably were an indication that something was brewing. I fainted very easily, was always intolerant to the cold and had GI issues for as far back as I can remember, just to name a few. It wasn’t until after I had my two youngest children (18 months apart) that I really began to see things changing. In addition to the above-mentioned problems, I had a headache almost every day. My body hurt all the time. I never slept well, but I suddenly was suffering from insomnia and running on about three or four hours of sleep, which for me (and probably most people) isn’t enough. At the time I was working as a nurse, and finally after months of feeling like I had the flu by the time I left work each day, I decided to see a doctor.

Fast forward and I now have a diagnosis of dysautonomia.

Suddenly I have a chronic illness.

I mean I knew I felt terrible, and it was a relief to know what was wrong, but hearing and reading you have chronic illness does something to the mind.

I read everything I could on the subject, and finally, things began to make sense. However, things don’t always make sense to my family. I’m not saying they aren’t supportive, but like a lot of “invisible diseases,” dysautonomia is hard to understand. Some days you feel like screaming, “I know five years ago I was able to chase my kid, work, run all the errands, come home and work out, clean, cook every meal, and never miss a beat… but I am not the same person I was then!” I don’t know why some days I feel great and then there are stretches of weeks I don’t feel well at all. If you think it’s hard to understand, then think about how the person living it feels.

2. We are cold! Yet we don’t handle the heat very well either.

When I was diagnosed with dysautonomia, I was also dual diagnosed with Raynaud’s disease. This can cause some areas of your body, primarily your hands, feet, and toes, to feel numb, cold, and even change colors in response to cold temperatures or stress. My hands, feet, and lips are often some shade of red or purple. You will see me in a fleece jacket all year round, even in 100-degree Alabama weather. I can’t handle the transition from the heat outside to the cool air inside, so I start immediately freezing when I walk inside. Some of us may be in jackets, some might be carrying salt shakers or Gatorade, but all of us are trying to keep our blood pressure up and our blood circulating.

Funny story… When I was working at the hospital, it was always cold, so my lips always were some shade of purple. They were like that so much that people thought I wore purple lipstick!

3. We are tired! And we are all tired for so many different reasons.

Insomnia is so common with dysautonomia. Combine insomnia with our constant drops in blood pressure and poor perfusion and that equals one exhausting situation! Little things like going to the grocery store, running errands, cleaning the house, etc. can leave us completely wiped out some days. One of the hardest parts for me to get adjusted to is I never know how I am going to feel after doing these things. Some days I feel totally fine, but then others it’s all I can do to make it to bedtime.

4. My nerves can’t take it!

Literally! Dysautonomia is a disorder of the autonomic nervous system which has a direct role in the physical response to stress. Stress can look like a lot of different things for people. Whether it is attending an IEP meeting, meeting a deadline, financial or emotional stress, etc., my ability to handle those pressures and stressors are different than they were even five to 10 years ago. I get severe headaches, brain fog, tachycardia, my “purple hue” seems to get worse, and I become physically exhausted. I think the worst part is I never really know how I will respond. Maybe I will be OK… Maybe I will be so tired I can’t hold my head up.

5. We are mourning the person we used to be.

It doesn’t matter how long ago you might have been diagnosed, if you are anything like me you remember how you felt before. I remember when I used to could do all.the.things. and not feel like I need a nap. Stat! Sure, I am getting older, and yes, I am a mom, but this type of exhaustion and fatigue isn’t anything I can describe. I remember being able to work out on the stair climber or do kickboxing without having to get a doctor’s permission. I remember being able to go to work, then running a few errands before going home to cook dinner without even missing a beat. I miss my energetic, outgoing, happy self. I remember her, but I don’t think she knows me at all anymore.

I understand not everyone’s journey is the same. I also get there will be many people who read this who may not understand what it’s like to live with dysautonomia or any other chronic illness for that matter. This informal piece was written for the sole purpose of shedding light on this diagnosis and sharing a small glimpse into my life with it.

Author’s note: Any medical information included is based on my personal experience. For all questions or concerns regarding health and information on a diagnosis, please consult a doctor or medical professional.