Dysautonomia is an umbrella medical term utilized for a group of complex conditions that are caused by a dysfunction of the autonomic nervous system (ANS). There are different conditions under the term of dysautonomia (all different conditions). The various diagnosis terms given to patients within the DYNA organization are
- Postural Orthostatic Tachycardia Syndrome (POTS)
- Neurally Mediated Hypotension (NMH)
- Neurocardiogenic Syncope (NCS)
- Vasovagal Syncope
- Generalized Dysautonomia
- Birth Dysautonomia
- Non-Familial Dysautonomia
- Post-Viral Dysautonomia.
Dysautonomia conditions are usually chronic and invisible. Chronic means something is long term (chronic does not necessarily mean it will last forever). Invisible means that you can't actually see what is going on inside.
The symptoms your friend experiences are mostly invisible to others (you can't see heart rate issues, blood pressure issues, migraines, fatigue, dizziness, insomnia, brain fog etc.) You may be able to see that your friend is a little pale (without makeup on), you may notice that they have blood pooling in their legs and feet (which can appear blotchy or bluish), but for the most part you won't see the symptoms your friend is dealing with (they are internal symptoms such as heart rate/blood pressure issues, migraines, dizziness, fatigue, stomach problems, etc.). However, the symptoms are very real, your friend has little control over them, and they do happen. Your friend needs your support now more than ever.
You can learn about dysautonomia conditions by reading this site and our brochures. Remember, just like other medical conditions, dysautonomia has various degrees and everyone is impacted differently. Please be careful when reading things on the Internet and be sure to only utilize accurate, reliable resources when researching your friend's condition.
It gets very hard to deal with dysautonomia day in and day out, especially for a young person. Your friend will have good days and bad days. It's very common for people with chronic conditions to have periods where they do well and periods where they are not doing as well.
On their good days they just want to get on with life and enjoy themselves. They will probably have to make some modifications to their activities and do certain things like taking their medicine, drinking a lot of water, eating salty snacks, and paying close attention to their body signals — but they still want to be the person they were before they got their condition.
Don't treat them any differently, but be sensitive to what they are dealing with. Help them resume their lives by supporting them in every way you can. Remember, they may not always be able to participate in certain activities with you like they used to (playing soccer, running track, etc.), but you can still invite them and give them the option to say 'No, but thanks for asking me." It hurts to not be included. Give them options, and include them in other ways too. Invite them for a movie or meet them at the mall food court. Just don't forget about them! It's a good idea to talk to them and tell them that you want to help and that you will stick by them through thick and thin. Find out from them what it's like to have dysautonomia and specifically ask them how you can help.
Stay in touch
Usually, one of the hardest things for young people with severe cases of dysautonomia to deal with is the social isolation they experience. If they are unable to attend school they are suddenly not included in activities. They tend to feel very left out and abandoned. Don't allow that to happen!
Although it may sound like fun to stay home from school… it sure isn't day in and day out! You would get very tired of it, too, and you would miss your friends and classmates. You would miss being active, you would miss being social, and you would get really tired of not feeling well. It is actually very, very hard to deal with on a constant basis.
Call your friend whenever you can. E-mail them quick "Thinking of You" notes. Keep in touch with them, and keep them in touch with what's going on at school, etc. At first doing this may seem easy for you, but as time goes on it won't be as easy because you may get sidetracked with your own busy social life. Talk to your parents about it; they will help you stay connected to your friend, and they may have some suggestions.
Also, talk to the teachers at your school and give them our web site to check out. Suggest that they send notes home to your friend to help them realize they are still a part of your school even if they can't attend. Include them in school activities, tell them about things they may be able to attend, and keep them as socially involved as possible.
It isn't pleasant to be a young person with an unusual chronic invisible condition like dysautonomia, but with a good friend by their side it will be much easier!