Her son, her husband, her neurologist – they make up Tatjana B.'s personal support team. Outside this environment, the young woman with MS would like to see more sensitivity and understanding from society – even when the symptoms of a disease are invisible. What changes she would like to see in the health care system and how she rolls otherwise, she tells us on REHACARE.com.
Name: Tatjana B. Age: 25 City: Celle, Germany Occupation: Management assistant for office management Disability: Multiple sclerosis
Tatjana B.: A good day for me is when my fatigue doesn't restrict me too much and I can enjoy activities with my family and friends. Also, when working is easier for me on these days and gives me back a bit of normality.
Which auxiliary means or daily living aids are indispensable for you?
Tatjana B.: I currently use glasses due to optic neuritis, a bottle opener to help me unscrew bottles as I often lack strength in my hands and my TENS (transcutaneous electrical nerve stimulation) machine for nerve pain and muscle spasms.
What would you like to see from society and your fellow people in dealing with people with disabilities?
Tatjana B.: More sensitivity and understanding. I know that it is difficult for people who are not affected to understand. Especially when the symptoms are invisible to them. But for us as the ones affected, the symptoms are palpable and present. Especially the fatigue, the dizziness, the nerve pain are very, very stressful for us. Some people give us the feeling that we are making things up or exaggerating, and that makes us/me very sad.
It would be nice if our fellow human beings thought before speaking. I, for example, can be approached and questioned, I like to answer questions and clear up false claims.
Tatjana B. is very grateful for the help of her family and her neurologist.
What has been your biggest challenge so far that you have mastered – and what has helped you?
Tatjana B.: That is a difficult question. I was diagnosed with MS during my training and had to somehow manage my everyday life between training, child, household, studying, doctor's appointments, physical limitations. The final diagnosis came after I had successfully completed my training. It took time to reconcile and come to terms with all this. Even now there are moments when I realise that I still haven't processed everything and look to the future with fear.
My neurologist and my family were my helpers during this time – my son gave me the strength to keep going and my neurologist was always there for me, looking for solutions and always taking me seriously. I am still grateful to him for that today. Of course, my husband was also a great help to me – whether mentally or with support in the household.
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?
Tatjana B.: That our health system gets even better – and that in many respects, be it the working conditions or the wages of the employees. Unfortunately, doctors and staff have a lot of time pressure, they are understaffed and try to tear themselves apart. This cannot go well. In addition, the processing of aids and necessary therapies should be improved! Unfortunately, it is very often about the money and not about the people themselves.
If nothing was impossible: Who would you like to meet one day and why?
Tatjana B.: I would like to meet Stephen Hawking. I have great respect for him, how he has mastered everything, despite his serious illness. He has been an absolute role model and a strong-willed person.
What was your best REHACARE experience?
Tatjana B.: I have not visited REHACARE yet, but I am looking forward to new experiences.