What Complex Regional Pain Syndrome Takes Away From You

November is Complex Regional Pain Syndrome (CRPS) Awareness Month, and I’m one of the unfortunate ones who live with not one, but two, rare diseases that don’t get near enough awareness, attention or funding. Without these, and without advocating, there is little-to-no-hope for a cure; a cure so many of us living with CRPS and keratoconus so desperately want and need.

CRPS is sometimes dubbed the suicide disease (and I totally get why), and is rated the highest on the pain scale. For many of us, this disease of the sympathetic nervous system has robbed us of a lot of our former lives.

Lives without constant, agonizing pain. Pain that has so many symptoms it is hard to even put into words for another to try to understand. Pain 99.9% of you will never have to experience.

Lives without constant anxiety and fear of what this disease could do to us in the future — what injuries could cause it to spread, where it could spread on its own, because God knows it has a mind of its own. Without anger, frustration and deep sorrow, and even denial that never seems to go away.

Lives without searching for capable, knowledgeable, kind doctors who know and care about this disease, which is a rarity. Without millions of doctor’s appointments, leading to appointment fatigue and frustration. Without trying expensive, painful procedures that aren’t FDA approved and not really expected to work. Without meds that don’t touch the pain, but instead give you crappy side effects.

Lives without thousands of medical bills. Where you wish you could spend more money on fun things (or hell even save money) than exuberant bills that won’t ever stop.

Lives where you can feel some resemblance of physical, mental and financial security, and not wonder what tomorrow may bring (or hell even an hour from now) in regards to this disease.

Lives where you don’t feel so damn alone and hopeless. Where you don’t ask “why me?” Where people don’t tell you “but you don’t look sick,” “just don’t think about it,” “don’t worry,” “it can’t be that bad” (the list goes on). Or, compare their seemingly trivial pains (which you can’t really fault them for because they just can’t comprehend). With CRPS, they either don’t know what it is, don’t care to educate themselves when they do, don’t believe it or simply don’t care because it’s not affecting them.

But...

We are out there. We may be rare, but we are fighting a battle you’ll hopefully never have to go through. We are warriors. We are so strong. We are still us, despite how much the disease robs from us. We are still the person you know and love. We will continue to hope and pray for more research, more awareness, more funding, viable treatments, a cure.

But we need your help, too. We ask that you educate yourselves if someone you care about has a rare disease, share about it so others can learn and the knowledge spreads. We ask that you treat us like we are human, like we matter, like we are not sick or weak, like CRPS is not our identity, but maybe with a bit more kindness and empathy. A simple, “I’m here to listen” or “I’m here for you, can I do anything?” goes a long way.

Keep fighting and sharing your stories rare disease warriors — it matters and so do you.