Disclaimer: I am not a doctor. I am speaking from experience and my own research. If you have questions, please ask your physician or go to the Dysautonomia International website.
A lot of people have to ask, “What is dysautonomia?” It’s a fair question. Dysautonomia is not something that is often addressed or explained. Whether you are diagnosed or had a family member diagnosed with dysautonomia, it’s important to understand what that means. In Spring 2019, I was diagnosed with Postural Orthostatic Tachycardia Syndrome. This is only one of the diseases or syndromes that falls under the umbrella of dysautonomia.
Dysautonomia is a general term. It covers diagnoses that affect the systems of your body that you don’t think about. This refers to the autonomic nervous system. It controls everything. It affects heart rate, blood pressure, digestion, etc. . With dysautonomia, you can suffer from headaches, tachycardia, orthostatic hypotension, gastroparesis, to name a few. This doesn’t mean that everyone with dysautonomia experiences the same thing. In fact, dysautonomia can be elusive. Most dysautonomia patients have a wide variety of symptoms. Rarely do two patients present the exact same way.
The treatment for dysautonomia is dependent on diagnosis. When I first started having issues, my main problem was orthostatic hypotension and tachycardia. Treatment was compression garments, an increased salt and water intake. I also take blood pressure medication and a heart rate control drug. Now, I’ve progressed. I developed more neurological deficits. They affect my bladder, stomach, and vision among other things. This means that I start to fit into a different category of dysautonomia. It goes beyond Postural Orthostatic Tachycardia Syndrome or POTs. Not all dysautonomia is progressive. From what I understand, I am only a patient and not an expert by any means. Patients symptoms can eb and flow depending on their lifestyle. Stress, fitness, and diet can all play a large role in symptom management for most people. Some people can even have their symptoms go away altogether.
Dysautonomia International has compared people with POTs to people with COPD. It can be debilitating. For me, some days I can struggle to walk and I know I’m not the only one with this problem. It’s difficult as a family member to understand what a loved one is going through. On the outside, people with dysautonomia often look fine. It’s important to check in with them and support them. We often have a lot of doctors appointments and it can be emotionally taxing. One thing I’d like to say is, please be respectful. It may be difficult to be empathetic to something you cannot see but that doesn’t mean it doesn’t exist. Like I’ve said in a previous article, if looks determined how well my body functions, I’d be doing great. Unfortunately, it doesn’t work that way. When my heart rate is at 170 from climbing the stairs, rude comments about how I could be doing more aren’t helpful. In fact, they can be hurtful.
Dysautonomia is a broad term. It’s used to describe a large amount of people suffering from an invisible illness. Treatment can look different depending on the individual diagnosis. Whether you’re a family member or a patient, it’s important to respect one another. Getting this diagnosis can be intimidating. Please remember to be patient with individuals dealing with dysautonomia. Their struggles are deeper than what you can see. If you have rude or unhelpful comments, keep them to yourself. Love one another and be respectful.