Rare diseases, chronic illness and invisible conditions all present many, many challenges both to individuals and the medical community. This leaves countless individuals subject to the pain of misdiagnosis - or worse yet, no diagnosis at all- missing out on the opportunity to take control of their lives. Given the nature of rare, chronic and invisible conditions, it’s understandable that it’s a complex world to explore. Many conditions have symptoms that aren’t easily detectable or exhibit in various ways, making detection and diagnosis much more challenging. Still, if we can shift our perspective and approach in these three ways, we’ll be able to bring about more awareness, treatment, and healing.
Just because it’s rare, chronic or invisible doesn’t mean it doesn’t exist. Millions of people have severe illnesses that would be considered rare or invisible. It is estimated that over 100 million people in the world have an invisible disability and 1 in 15 people worldwide suffer from a rare disease. Some situations are more “rare” than others, but the concept and possibility for an illness/disorder or disability to be one of the thousands of invisible conditions is actually quite common.
There’s a common expression in the medical field,
“When you hear hoofbeats, think horses, not zebras.”
Which means, when symptoms present themselves, look for what’s most common or likely.
But this is something we should always keep in mind,
“While searching for horses, remember that zebras exist.”
Just because it’s rare, chronic or invisible doesn’t mean it’s impossible. Sometimes individuals in the medical field, in a sense, “give up.” Meaning since many rare, chronic and invisible conditions don’t have a cure or are challenging to diagnose, they don’t engage with them the same. They look at it as impossible or invalidate it altogether.
I had a friend who went to a therapist with concerns about their mental health and wanted to explore something they’d researched, Borderline Personality Disorder - a tricky disorder with no “cure.” The therapist responded, “Well, BPD doesn’t have a cure, so I don’t do that.” This resulted in a failed treatment plan and more suffering. They luckily went to a new doctor who specialized in the disorder, and they received proper treatment and a greater perspective on mental health awareness.
Just because it’s rare, chronic or invisible doesn’t mean it doesn’t have value. Whether we’d like to admit it or not, although the medical field should be about health and healing, it’s also a billion-dollar industry. It wants to make money but also requires money for research and treatment development. Since many rare, chronic and invisible conditions have no cure, generating the financing necessary for sustained research and attention is difficult. And with 95% of invisible conditions having no FDA-approved medicinal treatments, big companies don’t find “value,” - i.e. profits - in these conditions.
Thankfully, the world is realizing every day that these “rare” conditions are more common than once believed, which has led to more awareness and funding for new treatments. We have a long way to go, but we are in the right direction.
By spreading our voices, supporting each other, and being open, we create a clear message:
We exist, we are valuable, and we are a community.