The last three months has been a special period of time for OIFE and myself. I will never forget the moment when Eero told me that our vice president Ida Männistö (30) was no longer with us, but had passed away suddenly in her home. To me, Ida was both a colleague in the OIFE Executive Committee, but she was also a friend, a kindred spirit and a young person with OI. Ida was curious, smart, fearless, engaged and never afraid of new challenges. She lived life to the fullest and we all feel very sad that she is not around us anymore.
In dark moments I wonder if people with OI sometimes live too much. As many other people with OI, Ida gave one hundred per cent whether it was work, education, dating, travelling, partying or other life projects. Are we sometimes trying too hard to be “normal” and live our lives to the fullest while our bodies are telling us take some time to relax?
Usually I am able to create some kind of distance between myself and sad things that happen in the OI-community. With several hundred OI-friends on Facebook, I get first hand information anytime someone has a bad fracture, an accident or when somebody dies. This can of course cause bad feelings and worry. But usually I’m able to cope.
But this time it really got to me. I felt physically ill for at least a week after Ida died. I had all kinds of weird physical symptoms and my thoughts were stuck on repeat. What happened? Was it because of OI? Should I also be worried? Are we working too much? Should I take more care of my health? All of these questions were haunting me and I completely lost my ability to concentrate…
And Ida is unfortunately not the only young person with OI who has left us too early lately. One and a half month later we heard about Michael from Denmark. And I know there are others. We definitely need more research and knowledge to understand the causes of these deaths. And we must be able to talk about it, even if it’s causing anxiety in the community. Just like we have to be able to address other taboo topics like overprotection, sexuality, obesity, depression, anxiety and so called inspiration porn. Are we really unbreakable spirits or are we just as fragile as anyone else?
I’m not entirely sure how to address all these complex issues. But I do know that we have to address them in an inclusive way without prejudice. Because all people are different! So are people with OI and their friends and families…
Statistically people with OI are good at coping with our rather complex disease. We score the same or even better than the average population in research studies about quality of life – asking about depression, anxiety and coping skills. Why? Are the questions just wrong? Are we hiding something? Exaggerating? Perhaps we just have psychological coping skills we have learned from an early age.
But one thing is certain: We are not invincible and we are certainly not unbreakable – even if we sometimes like to project an image of it! A few weeks ago daredevil Penny Clapcott from the UK tweeted: “I wish the OI community was able to talk more freely about this, but with the slogan “unbreakable spirit” its hard to show that at times we’re definitely just as fragile. There is still a lot of work to do around PTSD of breaking the stigma.”
Because despite being strong, fierce and having great coping skills – people with OI still face psychological problems like depression, anxiety and even Post Traumatic Stress Disorders (PTSD). But the “system” struggles to care for it, because it has more focus on our physical challenges. In a multidisciplinary setting of OI-management, many will agree that the PT, OT and a medical doctor have a natural place. But what about the psychologists?
Some (but not all) people with OI have psychological issues that are not addressed, which they need professional support to handle. The Quality of Life 4 OI-conference was a first important step in addressing this need, with their deep dive session about this topic. But we need to continue the process started in Amsterdam. This includes information about psychological support in our fact sheets, websites, multidisciplinary clinics and guidelines being developed.
And perhaps the first step is admitting to the fact that we are not unbreakable spirits. People with OI can be strong, persistent, knowledgeable and much more. But we can also break both our bodies and our mind. Or fall into a deep dark hole. And it should not be based on luck if you have someone there to catch you when you fall…
Written by Ingunn Westerheim, OIFE President
Cover photo showing:
Acrobat, daredevil and BBS-member Penny Clapcott hanging in the hands of the Norwegian performer Eskil Rønningsbakken