Multiple sclerosis – living with an invisible disability
Living with an invisible disability – Elena Zubiaurre knows how it feels. She lives with multiple sclerosis (MS). But strangers don't see it. That's why she would like society to be more careful and attentive. She tells REHACARE.com which everyday aids and auxiliary means should also be invented and why home office and mandatory masks are a blessing for her.
Name: Elena Zubiaurre Age: 29 City: Hamburg, Germany Occupation: I work in a foundation and deal with culture and education. Impairment: Multiple sclerosis
Elena Zubiaurre: The best days are those when I (almost) forget my illness, feel carefree and can enjoy beautiful moments – preferably in the sun.
Which auxiliary means or daily living aids are indispensable for you?
Elena Zubiaurre: My limitation is my fatigue that is present almost every day. I try to organize my daily life in such a way that I always feel well taken care of so that I can get through as fit as possible. This includes taking breaks, drinking regularly, and always listening to my body. I use apps to better understand my body and to identify triggers for my headaches, for example.
What would you like to see from society and your fellow people in dealing with people with disabilities?
Elena Zubiaurre: I wish that society would develop more understanding for invisible disabilities. Living with a chronic illness is not always recognizable as such from the outside. You never know what kind of effort it takes for people to do normal everyday things. That is why I would like to see more caution and more mindful encounters.
Which assistive device would urgently need to be invented and/or improved?
Elena Zubiaurre: I hope that at some point there will be public transport in which there are always enough seats for everyone, so that young people like me don't meet with incomprehension when you ask for a seat. After all, you don't want to communicate your own life story and illness directly. A pill against fatigue would not be bad either. I wish and hope that also in the case of (so far) chronic diseases, research will be done in the direction of healing and not only in the search for forms of treatment. I would also immediately buy walking aids that can be folded up very tiny and extended to form stools, preferably chic and colorful. I also hope that wheelchairs will get better and better and that the world will become more accessible, so that the fear of wheelchairs no longer has to be real.
What has been your biggest challenge so far that you have mastered – and what has helped you?
Elena Zubiaurre: My biggest challenge so far is working full time, which is a lot of fun but also drains my energy. The only thing that helps is great openness in the workplace and caring colleagues, whom I have and for whom I am very grateful.
What can the assistive technology industry learn from the Corona pandemic to make life easier and/or better for people with disabilities in the future?
Elena Zubiaurre: Online appointments and home office were a real blessing during the pandemic for people like me, for whom almost every trip is exhausting. Also, in my opinion, you should continue to wear masks at least in the supermarket. Many patients with MS take immunosuppressants and are very susceptible to many viruses (not only COVID-19). The masks are very protective. Also the deceleration, by less people in many places, helps. MS patients often have problems with their sense of balance and are not always fit on their feet – fewer people in the store and guided paths minimize the fear of being bumped into and, in the worst case, falling.
If nothing would be impossible: Who would you like to meet one day and why?
Elena Zubiaurre: I would love to meet Astrid Lindgren and take a walk with her through Swedish villages, then talk about childhood and the big issues of today over coffee and cake.
What was your best REHACARE experience?
Elena Zubiaurre: I'll know that after the trade fair in Düsseldorf, for sure!
What I wanted to say ...
Elena Zubiaurre: Malu Dreyer, the Minister President of Rhineland-Palatinate, is sometimes in a wheelchair and then again not. Particularly in the case of MS, those affected are repeatedly dependent on various aids, depending on the phase of the disease. This irritates many people – but it shouldn't.