Being an individual living with dysautonomia or autonomic disorder is very challenging. It is a complex condition brought about by the dysfunction in the autonomic nervous system (ANS). Some of the complications and forms of dysautonomia include Neurally Mediated Hypotension (NMH), Vasovagal Syncope, Postural Orthostatic Tachycardia Syndrome (POTS), Birth Dysautonomia, danlos syndrome, orthostatic hypotension, and many more.
What’s unique about dysautonomia is that most symptoms are invisible. The dysautonomia symptoms are difficult to recognize from the outside. Only the patients themselves can acknowledge that they are housing dysautonomia. This is because all signs are related to (tachycardia) heart rate issues, fatigue, dizziness, migraines, blood pressure issues, insomnia, etc.
Individuals with dysautonomia (particularly with tachycardia syndrome pots) tend to keep their pain within themselves since many people do not know what’s going on in their bodies. They don’t share they have dysautonomia because of the fear of getting judged. The fear stems from the fact that they’re afraid others won’t believe what they’re saying about dysautonomia. This reality takes a toll on the mental health of patients with dysautonomia.
If you know someone who’s experiencing dysautonomia, it is essential to show your support to them. Here are ways on how to go about it:
Learn About Their Condition
It’s hard to empathize with a person who has dysautonomia if you don’t fully understand what they’re going through. Therefore, the first step that you should find the details of dysautonomia. Since dysautonomia a broad term, you can further look into postural tachycardia syndrome, orthostatic stress, orthostatic symptoms, and autonomic dysfunction depending on the situation.
In general, dysautonomia is a term for a group of disorders where the automatic nervous system does not function normally. Dysautonomia covers heart rate, blood pressure, digestion, body temperature, heart rate, hormones, bladder, and many other functions. In order to diagnose the form of dysautonomia, a tilt table test is conducted. Physical symptoms of dysautonomia typically include orthostatic intolerance, or the inability to stand long without feeling dizzy.
Ensure that you know what dysautonomia is all about, its symptoms, its possible treatments, etc. This way, it’s easier for you to relate to what they’re going through, especially if they’re frustrated about something.
Understand that dealing with dysautonomia patients is not easy. If you have dysautonomia, you’ll feel complicated emotions day in and day out. It can be a rollercoaster ride of good and bad days due to their chronic conditions.
On days that they’re doing well, they can proceed with life as if they’re normal. Yes, they may need some medication to address dysautonomia, but they still look like the person they were before housing dysautonomia.
On their bad days with dysautonomia, however, things are very different. They might feel a little bit sluggish and out of energy brought about by dysautonomia. It’s also difficult for them to force themselves to move since they need to be careful about their blood pressure as well as migraine attacks. Life under dysautonomia is pretty unpredictable, so they have to think twice before doing something.
Since dysautonomia can feel debilitating, it can also lead to anxiety disorders, panic disorder, chronic fatigue syndrome, psychiatric disorders, and more. In addition, studies have shown that health patients with postural orthostatic tachycardia POTS experience cognitive impairment and brain fog.
To give a patient with postural orthostatic tachycardia or dysautonomia a little bit of peace of mind, your role as parents, friends, or family members is to treat the patient normally. The orthostatic tachycardia syndrome pots situation makes it challenging when they feel that the people around them are walking on shattered glass.
Although you know that they cannot join some activities, they still feel good that they get invited on certain occasions. Invite them to go to movies or walk around the park should your circle of friends decide to hang out together. Yes, they might reject your offer. However, they’ll feel happier because they remain included despite the mental health of dysautonomia patients.
Sticking by them no matter what will not only improve the mental health of patients with dysautonomia or those with postural orthostatic tachycardia syndrome but will also boost the trust he or she has on you.
Join Them Do Their Creative Outlets
The mental health of patients with dysautonomia often find themselves stressed with their everyday lives. Their physical condition bothers them, but their stress often comes from the mental aspect. Their worries stem from difficulty completing day-to-day tasks, conducting stressful doctor checkups, and explaining their illness to the people around them.
To be able to address this, experts recommend pursuing some creative outlets. It includes painting, listening to music, reading, watching TV, writing, and more. These are creative activities that will distract them from thinking about the stressors they are facing. These activities also provide their body with tranquility and more control which may improve their symptoms. It can also improve their cognitive function.
Exploring these stress management activities with them will inspire more especially because it’s more enjoyable to do these things with friends and family. Add to this the friendly competition that can add thrill and enjoyment.
Keep In Touch With Them
Individuals with dysautonomia also experience social isolation. It’s harder for younger people to attend school since they get exempted from activities. Meanwhile, older ones isolate themselves because they feel ashamed of having this particular illness. They feel embarrassed that they’re vulnerable and not as strong as they were before.
As a friend or family member, you must keep in touch with them to keep them from feeling abandoned and left out. Make sure to call them once in a while, so they know that you’re always there for them. You may even visit them at times, should your schedule permits.
Keep in mind, however, to not be too pushy. Don’t force yourself if they’re still not ready to let you in. Ask how they’re feeling once in a while but if they’re unwilling to answer and open up, let them. Just letting them know that you’re there is enough.
Living with an illness, such as dysautonomia, is challenging. Individuals experiencing this condition need a support system that will help them go through this journey. Being there for them makes it easier for them to overcome these roadblocks.