14 Tips for Having Fun at Concerts With Dysautonomia

I love music. I am fortunate that between the ages of 16 and 45 I attended more live concerts than I can count. My last concert while healthy was in October 2010. I saw the Buffalo band the Goo Goo Dolls at a small venue. I showed early symptoms of dysautonomia but had no idea that life would turn upside down two months later after the flu seemed to dismantle my autonomic nervous system.

I had to sell Elton John tickets in 2011 as I was not well enough to attend the concert. That was a huge disappointment and for a while I could not enjoy concerts.

I slowly got back to attending shows – first the Goo Goo Dolls at an outside venue in which I could stretch out on the lawn and enjoy the atmosphere and then the same band in smaller theaters in Buffalo.

I recently ventured out this summer into larger arenas in Cleveland, Ohio  and saw U2 at an 80,000-person stadium and Billy Joel at a ballpark half the size. I will see U2 again in my hometown.

Before even considering attending a show while living with chronic illness, here are tips I have found helpful to a successful concert experience.

1. Read the assessable information on the venue’s website. See what can and cannot be brought into the concert. At the two shows I attended, a stadium size clear bag was required. These can be purchased on Amazon.

2. Secure a doctor’s note that states necessary accommodations. A brief letter I carry explains I have a neurological condition which causes frequent dehydration; sodium-based drinks must be carried at all times. While I probably could purchase a Gatorade-type drink at concerts, the prices for the amount I need can be exorbitant and a low-sugar option may not be available.

3. Be pleasant but firm in your needs. At one of my earliest concerts after the dysautonomia diagnosis, I was promised a folding chair to elevate  feet. However, security refused this accommodation until my husband spoke up and said without the chair I faint. A chair was quickly produced.

4. Call ahead to gather information on where is the closest parking, what entrance is best for ease of walking and to interact with people accustomed to dealing with medical needs and any other relevant information. Ask for ADA (Americans with Disability Act) accommodations. If the person on the phone cannot help you, ask who is available for assistance. I have purchased seats that did not fit my needs, as some concerts sell out so quickly there is no other choice. If this happens, contact the stadium immediately and ask for a change of seats. A nominal fee may be charged but this is well worth the trouble.

5. Don’t be afraid to ask for what you need. We have a right to attend concerts even if accommodations are necessary.

6. Make sure to take necessary precautions before you attend a show. For me this may include taking medications, increasing fluids and resting prior to attending.

7. Bring a sweatshirt in case the temperature changes. I also find compression socks helpful.

8. Provide feedback to the venue. At the two summer concerts I mentioned I had completely different experiences with security – one positive and the other negative. I wrote a joint letter to the venues, stating what occurred and why it is important for security to be aware of people with chronic illnesses (oftentimes invisible) and treat them with respect. I received a thank you from the one venue and several emails from the other assuring me security procedures would be reviewed. I also received a follow-up call thanking me for my input and an assurance changes were made. I am heading back to this venue – as their guest – and will be anxious to see if security measures have improved.

9. Bring someone with you who understands your abilities. Review ahead of time any needs in which they can assist.

10. Have a plan if you feel unwell during the show. I must keep my feet elevated or stretch out to feel better. For this reason I secure aisle seats. However, sometimes I need to leave the seats, go in to the concourse and stretch. I often scope out a place to do this, in addition to the bathrooms.

11. Ask your companion to stand in line and purchase your concessions.

12. Go into a show with the hope of attending the entire event but the realization that at times you might need to leave early.

13. Conserve energy. I often want to jump up, dance, sing and scream.  These are energy zappers so I try to contain my excitement.

14. Have fun.

We want to hear your story. Become a Mighty contributor here.