A personal example of Philipp von Gallwitz
At my company, admedicum, we do a lot of research with patients, patient experts and patient groups. We do it in rare and more common diseases. We regularly research coping with the disease in terms of symptoms or school, work, social activities, and more. And we know very well that when we ask patients or their caregivers about the burden or impact of “their” disease, their answers often leave out important aspects simply because they are not aware of them.
This is because it has become so normal for them that they don’t even realize (anymore) that it is a significant “burden” compared to not having the disease or disability. They have learned to “cope” with it to such an extent that they forget how it could be or was before. They develop what I like to call a “blind spot due to coping”.
One of our tasks when we do interviews and surveys, patient focus groups and workshops is to uncover and reveal these blind spots. And I think I am pretty good at it. Because I know the problem. Because I have training and experience. Because I am the caring father of a daughter with a severe rare disease.
So, it shouldn’t happen to me, right? I should know – oh so well – what the burden and impact of my adult child’s rare genetic disease means for her, for me, and for our family. I should be able to write it down and explain it in detail to others. Qualify and quantify with examples, emotions, consequences, and numbers. Right?
Oh boy… Here’s what happened last week:
Our daughter needs 24/7 assistance. She is now 22 years old and later this year she will move out of our home with a group of other young adults with cognitive and multiple disabilities into a shared apartment with regular students. It is a great project and we are looking forward to it!
For a few weeks now we have been working on an “Individual Support Plan” for our daughter. It’s required to decide the amount of social funding for the help and care she will need when she becomes independent from her parents.
We have years of experience with assistance and care. The files with details of what she needs take up many gigabytes on the drive. So we should be fine, and we felt very confident that we would leave no gap for the budget negotiations. Everything is under control.
Until last week. We were discussing the status of her and our “Individual Support Plans” with the other parents who are also preparing for the move. Someone starts listing the hours needed for shopping, cooking, laundry, cleaning, withdrawing money from the bank, etc.
I look at my wife. My wife looks at me. I cannot believe it. She cannot believe it.
We forgot all of this!
All this "shopping, cooking, laundry, cleaning, withdrawing money stuff" for our daughter has become so normal for us, so much a part of our daily routine...
…that we just didn’t think about the need for her to have someone else do it for her. All the hours of shopping, washing and cleaning in a week – are gone! All the time spent thinking about what she needs, likes, wants… – not mentioned!
We were puzzled. And yet, isn’t it typical? And funny too? My wife smiled first, and then we laughed!
This is what I call a “blind spot due to coping”. And it is even more reason to do research, ask good questions, and listen carefully to patients and caregivers. We have so much to say, and yes, often, we may need some help to realize it.
Philipp von Gallwitz
Managing Partner & Co-Founder admedicum
Father of Marie, who lives with a rare disease