DSN on The Mighty

Having a chronic illness is different than having the flu or a broken bone. Some days are better than others, with no indication as to how long “good days” will last. What can help the most is an understanding friend. Dysautonomia Support Network asked our members for ways they wanted their friends to reach out and support them. We loved hearing these ideas and hope it brings inspiration to others for how to be a good friend to someone with dysautonomia"....

There is always this question on patient health history questionnaires. It’s phrased somewhere along the lines of, “How would you rate your health?” Included are responses such as good, fair and poor. I always circled good. It was always subtle denial and desperation where I could imagine I was still healthy. I would always make these ridiculous allowances and exceptions. Whenever the topic of health came up, I’d ruminate on how I was fortunate...

I bet you never thought you would hear me say I am grateful for my rare diseases. Heck, I never thought I would ever say that. Being diagnosed with several rare diseases with no cure is life-altering and a hard concept to grasp at first. Of course, many days are filled with worry, frustration and pain. But today on Rare Disease Day, I am thankful for all of the life lessons my rare diseases have taught me...

Living with a chronic invisible illness means that, unfortunately, not everyone stands by you through all the pain, the appointments with various doctors, the hopeless days after bad appointments and flare-up days…and the fact that it may never go away, or even get better, no matter what you try. But there are always a few who help you so much more than the rest, and who will stand by you through anything...

Marriage is a challenging endeavor. You pick one person to take on life with and that includes the ups and the downs. It is easy to stand at the alter and vow before family and friends on your wedding day to love and honor – in sickness and health. It is part of the deal, but the application is much harder than just saying the words...

Living between a rock and a hard place is an accurate description of my life. I intentionally live a double life of sorts. You see, I am in recovery from addiction and a chronic pain patient. Right now, the climate in our society is very inflammatory when it comes to these two worlds. The recovery community is calling for stricter prescribing laws and the chronic pain community is upset with the addiction community for the epidemic. What either is failing to see is that both communities are struggling with chronic issues...

​We believe in the therapeutic affect of music at the Dysautonomia Support Network, so we asked our Facebook page followers, “If you live with dysautonomia, share one song that has helped you through a tough time.” Here are 25 of the most popular songs our followers came up with. The next time you are having a bad day, download this playlist and get inspired!

Dysautonomia is a difficult condition to explain to friends and family, especially since symptoms can vary from condition to condition. You simply “don’t get it until you get it.” Dysautonomia Support Network asked our members, “What does it feel like living with dysautonomia?” in the hopes of generating responses that were transparent, honest, and helpful for caregivers, family members, and friends. Their answers blew us out of the water with how much it resonated with our community...

Having a chronic illness is different than having the flu or a broken bone.  Some days are better than others, with no indication as to how long “good days” will last. What can help the most is an understanding friend. Dysautonomia Support Network asked our members for ways they wanted their friends to reach out and support them. We loved hearing these ideas and hope it brings inspiration to others for how to be a good friend to someone with dysautonomia...

Living with dysautonomia can be difficult and often those with it must adapt in unusual ways. We asked our members what things they do to survive their day-to-day that people don’t realize is because they have dysautonomia. We were surprised at how many simple ways our members help their symptoms that easily go overlooked by their friends and family. By hearing these stories, we can all get one step closer at understanding and empathizing...