Nina Zeiler is a maths graduate who performs pole dancing and aerial hoop. Diagnosed with EDS and PoTS, when she has a flare-up, “sometimes I feel like I will never get to where I was again, but I tell myself I will. So far I get back up every time,” she explains.
Nina is also an avid rock climber, pole dancing and aerial hoop teacher. Having started pole dancing seven years ago, she knew she had a problem with her body, but she did not know what. She was later diagnosed with EDS and then PoTS.
Ehlers-Danlos syndromes (EDS) is a connective tissue disorder. The collagen in Nina’s body (which holds her body together) is too weak and very stretchy. Therefore her joints tend to partially or fully dislocate often. Nina has multiple sprains and too often joint pain. EDS also affects all her internal organs, and she suffers from many digestive issues.
Postural tachycardia syndrome (PoTS) is an abnormal response by the autonomic (automatic) nervous system. PoTS affect Nina’s ability to stand and be upright for long periods. It also creates low blood pressure, extreme dizziness and heart palpitations. All of this leads her to chronic fatigue and chronic pain. Everything in her body is affected as it does not all function properly.
Pole and aerial hoop has changed Nina’s life. She always wanted to dance. One day she gave pole dancing a go, and she loved it. Having that strength in her muscles helps physically. Therefore, this encourages less joint dislocations, less pain and a lot more energy.
Mentally, pole and aerial give me something where I can say look, my body can do this thing. Look, I am not completely broken.NINA ZEILER
EDS and PoTS affect her daily life. It is challenging for Nina to have varying symptoms. One day she can walk for an hour. The next, she can barely walk up the road. This fact is mentally challenging as well as practically annoying. Every day Nina has to plan for both eventualities as she does not know what each day has in store. “It is mentally challenging as I can do all sorts of movements in pole and ariel that most able body, healthy people cannot do. But then I still struggle to stand or walk for five minutes some days,” explains Nina. She struggles to ask for accommodations. She can hang off a pole, but then some days, she cannot even stand or walk. It does not necessarily feel logical, and all the differences are mentally challenging, but unfortunately, that is the case.
There have been periods in Nina’s dancing life where she has had flare-ups. She cannot pole dance or aerial hoop. During the lockdown, she could not go into studios, and she struggled as she knew her body was getting worse. She started to feel like it would never end and that she would not get back to it. However, Nina claims she is stubborn and will try absolutely everything to get back to something she enjoys.
It is so amazing that I can still do pole and aerial, and I am grateful for it every day. I am grateful that my body can do it every day. It gives me hope.NINA ZEILER
Nina believes that she can keep doing the sport for as long as possible if her symptoms are manageable. Whilst having to start back slow after a flare-up and build her way back up, this can be difficult as it feels ten times harder than it should. The beginning sessions back can be horrible. She has to keep going, take it easy and do very little to start. She states, “I am impatient. I want to go back to what I used to be able to do. But I keep going because I love it. I know what it is worth to keep persevering with it”.
When you have a flare-up, and it sets you back, you have to know your strength and what you can achieve. Sometimes Nina feels that it will never happen, and she will never get back to where she was. Nevertheless, she tells herself she will, and so far, she has managed to get back up every time. Nina loves to dance and has to go to a mental place of having fun. To keep going to do as much as she can to have fun, and even if she cannot get back quicker than before, she will continue to have fun and embrace herself. The moment it stops being fun and begins to hurt her body, she will stop and not push past it. It is the enjoyment of the sport that gets her through. It gets her up to dance.
You can feel very alone when experiencing this. Nina did. She felt very alone for a long time. However, she discovered a community of people suffering from EDS and PoTS. Immersing herself in this community was the best thing for her. To share experiences, ask for advice on what they do in situations and events etc., mentally helped her so much.
Starting small when finding and challenging yourself to a sport is Nina’s piece of advice. Start slow for five minutes. Even if you think you can do more, stop. If you have a flare-up, it does not mean it will happen every time. Many people tend to quit the sport once they experience one flare-up. Trust your body and yourself, but sometimes it can take quite a few goes, especially with EDS, and it is a lot more possible than you might think. Find a sport that is strength building but not repetitive where you are very aware of where your body is. This fact is beneficial for people suffering from EDS.
Start small, give it a go, and remember, you are not alone. Nina can get back up every time, and so can you.