Kathrin Bay lives at her own pace: Due to a nerve disorder, slight movements, touches and even the wind cause severe pain in her feet, legs and joints. But Kathrin Bay has learned to deal with it. She is grateful for the assistive devices that support her. What she wishes for from society and how she rolls otherwise, she tells us on REHACARE.com.
Name: Kathrin Bay Age: 17 City: Lüdinghausen, Germany Occupation: Pupil Disability: Chronic pain in both lower legs, feet and in all joints, anxiety disorder
Kathrin Bay: A good day for me is when I wake up with little pain and therefore get out of bed more easily. When I manage to complete the tasks I have set myself without exhausting myself and being "punished" with pain at the end of the day. When I can be outside without freezing, all the assistive devices work and I can spend time outside with my pets.
Which auxiliary means or daily living aids are indispensable for you?
Kathrin Bay: My knee-high socks are the most most important thing for me. Due to my nerve disorder, every touch, every stimulus and every movement or muscle tension is associated with severe pain. My knee-high socks, which I wear day and night, ensure that I don't feel my trousers, the wind or a blanket too much.
The second assistive device that is incredibly important is my wheelchair with an electric traction device so that I can move faster than walking speed without a car. This means I can drive to nearby therapies or the shops independently and walk my dog on my own.
The stairlift ensures that I can get out at all. My electric handbike exercises my upper body, as I can't go swimming due to the pain. Jackie, my assistance dog, is my everyday companion. She gives me the courage to go out among people because she blocks me, recognizes stress early on, indicates it, then goes into a physical contact task (putting her head in my hand, jumping on my lap and putting her head on my shoulder) and thus relieves or prevents a lot of stress and therefore also pain.
What would you like to see from society and your fellow people in dealing with people with disabilities?
Kathrin Bay: I would very much like invisible illnesses to be taken seriously and for me not to be judged. I don't want people to judge me or decide for me what I can and can't do. I want to be allowed to decide without explanations what help I need and what is good for me. And I don't want to be overlooked.
I want to be treated as a fully-fledged person who is met with interest and not with prejudice. I would like to have the freedoms that other people take for granted. I would like to travel independently by bus and train without having to rely on help and having to share my space with bicycles, luggage and baby carriages. I would like to be able to get around cities in a relaxed manner, attend events with my assistant person without any problems and lead as independent a life as possible.
Which assistive device would urgently need to be invented and/or improved?
Kathrin Bay: I can only speak for my illness and I think that there are enough assistive devices and they are generally very good. Unfortunately, the real problem is that they are often prohibitively expensive and there are far too few quick repair options. Delivery times are often incredibly long and there are no replacements if they need to be repaired. In addition, therapists and doctors often have little knowledge and cannot give any advice on what might help. This also includes "little things" such as suitable wheelchair clothing or shoes that keep you warm.
Thanks to assistive devices such as knee-high socks, an electric traction device for her wheelchair and a stairlift, Kathrin Bay is able to attend nearby appointments and go for walks independently.
What has been your biggest challenge so far that you have mastered – and what has helped you?
Kathrin Bay: My biggest challenge was and still is the fact that social norms and goals are geared towards people without disabilities and that I can't achieve many things even with the greatest effort. I also had to radically slow down my life and throw many plans overboard.
Looking forward to life despite this and appreciating myself were my biggest challenges. All the people who have supported me along the way and continue to do so today have helped me a lot. In addition, my pets have given me a reason to smile every day and have shown me that they don't see achievements, but that our interaction with each other connects us.
If nothing was impossible: Who would you like to meet one day and why?
Kathrin Bay: I would like to meet key decision-makers in the healthcare sector to show them what it is like to live as a person with a disability for a day.
What was your best REHACARE experience?
Kathrin Bay: It was incredibly nice for me to realize that I wasn't alone. I found it a really great experience to feel so much acceptance with the opportunity to look at other assistive devices and exchange ideas with other people.
What I wanted to say...
Kathrin Bay: I would also like to see more accommodation in the world of work. More openness, flexibility and support. Living with my disability and especially with the pain takes an incredible amount of energy. When applications, appeals and assessments are added to the mix, it makes you wonder whether life is still worth living. I would therefore like to see much more help for those affected, comprehensive advice in all areas of life and support with implementation.