20 Messages for Anyone Newly Diagnosed With Dysautonomia

We asked the seasoned members of our Dysautonomia Support Network Divas and Dudes Support Group to share some words of wisdom to the members of the group at the beginning of their dysautonomia journey. Here is what they had to offer:

1. “No two people’s journeys are alike… don’t compare yourself to others. You know your body better than anyone.” — Dani F.

2. “Keep advocating! Take one day at a time.” — Maryellen W.

3. “Make sure your specialist listens to you and knows your symptoms. Not all treatments work for everyone.” — Bette D.

4. “I agree that we are all unique and have different journeys. Write a list of things you want to discuss with your doctor just in case you forget that day. Writing lists helps me so much. Also, it is OK to rest and take care of yourself.”  — Laney R.

5. “Listen to your body. Learn its ins and outs and signs. When you’re new it can feel as though you’re barely treading water, but you’ll get there.” — Katie T.

6. “Having lived with it for almost three years, I’d say what works for some does not work for all. I’ve been advised to do so many different things. Do one thing at a time to see if it helps and don’t feel pressured to do it just because others are. Oh, and goodness… be kind to yourself! If someone you loved had these conditions you would be overwhelmed with compassion for them. Turn that inward!” — Melissa S.

7. Trust your instincts. If you think you’re bad enough for an ER visit, then go! A little saline never hurt anyone… and for us, it can really be a lifesaver.” — Laurie H.

8. “Oh, so many times I look back and wonder why I refused an ambulance because ‘I didn’t want to make a fuss.’ If I’d only been more ‘fussy,’ I probably would have gotten a diagnosis a lot earlier!” — Claire M.

9. “Food can be your best medicine or your worst poison. Listen to your body. Two of my favorite safe foods are homemade chicken stock and white rice, because together with a little time and effort, you can make amazing risotto. It’s four whole ingredients and it’s an absolutely amazing new flavor and texture. Find ways to love the foods you can eat, if you’re still able to eat at all. (I wanted to be a chef before this, so I’m a little food oriented.)” — Mariah M.

10. “Stay hydrated. There is a long-held basic rule of thumb for daily hydration. It is: half your weight (in pounds) is how many ounces of water you should consume every day.” — Cindy S.

11. “Move slowly when getting up from lying down to sitting, and sitting to standing. Avoid bending around, and if you do, stand back up slowly.” — Cindy S.

12. “You will have periods of bad days, but I promise there will be good days too! Find your new ‘normal.’ You will figure out what helps and what hurts, remember that and trust yourself! Rest when you need to! Push yourself when it’s important as long as you will rest afterwards. It’s a balancing act sometimes! Listen to your body, trust your instincts and give yourself grace! You are a fighter! It’s OK to have have bad days, just don’t ever stop fighting!” — Beth C.

13. ”Managing this is a series of small victories. There may be the occasional break through for some, but mostly it is a compilation of successes that’s found over time. For example, raising the head of your bed may not seem to make much of a difference. Either compression stockings or extra salt and water. But combined it may make some difference. Again, my point is much of this is a series of small victories that accumulate to being a better managed you.” — George J.

14. Keep a symptom diary. In the beginning, the numbers probably matter, but as a veteran I find it isn’t the number, but the symptoms I pay attention to. I rarely take my vitals much these days. It was an uphill battle in the beginning, but it did get a lot better with time, and I am glad I advocated hard for myself until it did!” — Alexandra Z.

15. “When you think, ‘I can’t handle this,’ know that deep down inside a part of you can. That part might seem small, but it’s the flame of motivation that never goes out. Ask for encouragement or support on those days. This holds true for most humans. We all have rough days. ‘Be kind, for everyone you meet is fighting a hard battle.’ But it’s especially true with invisible illness.” — Beth G.

16. “It’s a roller coaster, both mentally and physically. Things that help me beyond meds: a shower chair, my wheelchair for going out, fluid loading (500 mL in less than five min) right before I do something that could make me worse, my heavy duty compression, meditation and self-hypnosis. Good psychological support, too. I know for me when it first got really bad, I didn’t want to go to seek that help because I had had doctors tell me in the past that my condition was psychological and I felt like I was saying they were right if I went to someone. But eventually I realized  I was depressed. That it went along with being sick and was normal. Finding someone who specializes in chronic illness and pain can be very helpful in gaining coping mechanisms.” — Erin S.

17. “Definitely that you need to do your own research and not be afraid to push your doctor to try different treatment if something doesn’t work for you.” — Julie R.

18. “Listen to your body. When you need to rest/sit etc. make sure you listen, even if you have to sit on the floor. You may look strange to others, but sitting on the floor is better than hitting it. Also, it’s so important to drink those fluids. Have both plain water and electrolyte drinks. And don’t be afraid to advocate for yourself, and try different specialists until you find one that works for you. Don’t stay with someone just because other people have liked them. We’re all different in terms of personality, what we are looking for in a doctor, as well as our symptoms. You’re strong, and you will get through this. On tough days (and good ones) we are here for you.” – Emi M.

19. “Always be prepared when leaving house. Salty snacks and fluids!” – Jennifer O.

20. “Things will get better with time and knowledge. Find a good support group like this one. Expect bad day and setbacks, never give up!” — Amanda A.