Janine Krippner
How we support each other contributes to the strength of our communities. What does this have to do with hazards and disasters? Stronger communities respond and recover better, and this includes caring for our most vulnerable.
It is always a good time for a reminder that we have no idea what is going on in other people’s lives, so it is best to simply act with kindness and compassion. We live in a world where people are emboldened by being awful to others online, and this can seep into everyday life.
As someone with Ehlers-Danlos Syndrome, which for me means symptoms including pain every day, I know all too well how one can appear happy and healthy on the outside but is facing an invisible battle.
Christie Reiser, a scientist and one of my closest colleagues and friends, lives with Complex Regional Pain Syndrome, or CRPS. This is the most painful condition known to humankind, also called the suicide disease for reasons that you can probably imagine.
Janine Krippner
Essentially, what is a 10/10 pain for a normal person, doesn’t touch what people like Christe go through daily. If you were to amputate a toe or finger with no anaesthesia, that pain is less than what they live with. In fact, she is looking to get her leg amputated with the hope that it helps, even though that is not a guaranteed outcome.
Christie is what we would call high functioning. She is also a project manager, overseeing difficult projects with her own team. Additionally, she is a helpful and present friend.
If you didn’t know the reality, you would have no idea that she struggles with this disease every single day. Some nights she ends up in the ER because of the risk of accidentally overdosing on pain medication when a flare happens. When pain gets that severe, she cannot stop it on her own.
To simplify a complex journey, this began with a simple trip that tore a ligament in her ankle.
This set off a string of events, including ankle surgery, that led to surviving with this. This can happen to anybody.
Like with many chronic illnesses, there is still no understanding of how this disease works. What is known is that this involves damaged nerves, causing severe nerve pain that can have implications for the entire body.
Because Christie lives in the USA, the cost of surviving is incredibly high. After insurance, it costs her $2,000-$3,000 a month for medications and necessary care. She has upwards of around 20 medical appointments per month due to the controlled substances that keep her alive, side-effects of those drugs, and fighting to find some way of reducing the constant pain.
What people who don’t live with pain or illness might not understand, is the resulting sheer physical, mental, and emotional exhaustion. Just going out takes a lot of planning. Christie is dealing with all of this while holding a full-time job.
She is an incredible example of how someone might look fine, but we truly cannot judge what other people are going through. Being a supportive community works not only in everyday life, but it leaves us more resilient should disaster strike.
