Helping others understand your symptoms with a rare / invisible condition is difficult. People know what they know. They understand enough about symptoms, dangers and life style modifications of common conditions like diabetes, migraines, asthma, flu, chicken pox, etc. They have experienced these conditions or know of others that have. They have been exposed to common conditions so much that when told the name of a common condition, nothing further needs to be explained. The person asking grimaces, says, "sorry man," and thinks to themselves how lucky they are to not have it. But they know. They know because they have experienced it either directly or indirectly.
On the flip side, people don't know about Cold Urticaria, Dysautonomia or Ehlers Danlos (and many other rare conditions). You start describing these conditions and the one you are talking to will walk away totally confused. You suddenly use words they have never heard before. You present them with concepts that are foreign. They cannot wrap their mind around what you give them so some will revert to thinking you made it all up, that you are lazy or a hypochondriac. If you are the parent of a child with an uncommon rare condition, they think Munchhausen by proxy.
The sad thing is that we cannot even refer individuals to medical websites, because the information provided is so basic and unclear. These are rare conditions, not much research is provided because they are rare, doctors are still testing theories and not always providing good answers.
Something you won't see on a well qualified medical website for cold
urticaria is that it is common for patients to have a low body (core)
temperature. It is common for suffers to deal with severe malaise,
exhaustion and daytime sleepiness. The affected person does not stop
suffering when the wheals or welts are gone. There is an attack on the
body and its ability to adjust to the circumstances. There is pain,
tiredness, burning, confusion, migraines, shock, stress, and so much
more.
Next time you see someone with a rare condition, realize you don't know everything, neither do the doctors or their websites. Learn to trust the patient. Expand on what do you know, learn something new, and help the person with the condition function as normally as possible. Realize the uncommon is the new common, there are many new illnesses.
