tech support…

Dysautonomia is a difficult condition to treat because it effects everyone differently. Although most dysautonomia patients experience similar symptoms, the exact list varies from patient to patient.  One medication may improve the symptoms in one patient, and worsen the symptoms in another. Therefore, there is no universal treatment plan for dysautonomiacs. However, there is one thing every dysautonomia sufferer I’ve talked to says has made a big difference in their condition: meeting fellow dysautonomiacs.

The very evening I was diagnosed with POTS (remember, POTS is a form of dysautonomia), I went home and scoured the internet for information. The cardiologist who diagnosed my POTS provided virtually no information, so I was confused and scared. One of the first sites I came across was the DINET “Meet Others” website (see below for link) which invites users with dysautonomia to enter their location and email address and others in the area who have volunteered to “welcome” the newly diagnosed receive an email with the new user’s email address. The volunteers are encouraged to contact the new user and maybe provide helpful advice or a friendly ear. I filled out the form and received emails from 6 or 7 individuals within the first 48 hours, all of whom were extremely friendly. One of the emails informed me of a Facebook group dedicated to POTSies in California and invited me to join.

Now, I am a member of 4 Facebook groups created to provide support to those with POTS/dysautonomia. Through those groups I have been able to connect online with others who understand my condition, provide helpful suggestions, and are always there to listen. Dysautonomia has introduced me to smart, beautiful, friendly people of all ages, nationalities, religions and backgrounds. The California group actually organizes meetups every couple of months, so I have had the wonderful experience of meeting other dysautonomiacs in person.

Our meetups can range in size from 10 to 40 people and are very informal. I remember saying to the BF as we left our first meetup that it was so great to spend time with a group of people in whose company I actually felt normal. At any given moment I am painfully aware that I don’t fit in most places anymore. I have more in common with my grandmother than I do people my own age. Yet talking with other dysautonomiacs helps me forget that.

I am fortunate that I have very supportive family and friends whose presence in my life is my greatest source of happiness. But I don’t want every conversation with those loved ones to be about my illness. And, it’s difficult for those who do not have POTS to relate….how could it not be? It’s even hard for me to understand why I have such difficulty standing. I have two legs, both of which work fine, I am of reasonable height and weight, and a few years ago I was great at standing. In fact, I rocked the crap out of standing….concerts, parks, meetings, bars – I could have been a professional stander. I don’t understand how something that should be so simple has become so onerous. Joining support groups allows me to vent those frustrations to people who experience the same challenges without overwhelming my loved ones.

In addition to providing comfort and support, dysautonomiac groups also provide great tips for managing the condition. Through my dysautonomiac comrades I have learned that pickle juice is a great source of sodium, compression socks (i.e. old lady socks) come in fun colors and patterns, cooling vests can help on that hot summer day, and countless other tips. I have received more help in managing my condition from dysautonomiac friends than I have from any other source.

If you suffer from dysautonomia/POTS and have not yet connected with other sufferers, I would highly encourage you to do so. Fill out the DINET Meet Others form and get connected with others in your area. Do an internet or Facebook search for dysautonomia support groups in your area. Or, if there are none, consider starting one! If you are not able to meet others in person due to your condition or your location, join one (or many!) of the Facebook groups.  Try the Dysautonomia Friend Finder Group, or the POTS Group (which has almost 3,500 members worldwide!!). I believe both groups are public, so be aware your posts are not confidential.

There are other “private” Facebook groups you can join where your posts are not viewable by non group members, but I don’t think I can link to those groups here since their posts are confidential. If you are interested in joining those groups send me an email at lindsay@dysautonomiac.com and I’ll help you figure it out.

“You are not your illness. You have an individual story to tell. You have a name, a history, a personality. Staying yourself is part of the battle.” – Julian Seifter, After the Diagnosis

Stay tuned.
– L