I often wonder why some think we are not sick. That some look at us like we are "faking it" or perhaps making it sound much worse than it really is. Or seeking pity or attention. All FALSE.
There is no greater pain on the planet known to medical science know to mankind than "Cluster Headaches".
I found this video on YouTube and it was made from a family member of a person surviving.
Although every patient is different, the description of pain is the same. Universally any cluster headache survivor will all tell you they have never experienced a worse pain. Dr. Peter Goadsby has stated that " Its the most painful disease known to medical science" "Childbirth is a doddle compared to Cluster Headaches" " Many have committed suicide or contemplated it".
Sometimes its frustrating that people say, "I get those, or my mom does" No she doesn't and unless she is 0.01% of the worlds population which in Canada is well under 1000 people. I highly doubt she has them. Other day someone told me while taking my blood they get them too. Rather than argue,explain. I just said nothing.
December 2009 I wanted and was planning my funeral. A so called friend said " I didn't have to quit my job because of them". Little did he know I was planning my own funeral. Little did he know that I have read 75% of us commit suicide. Its not just a headache. No we are not faking it. The government has recognised its a disability. I have had 4 brain surgeries. There is no faking this. There is not a human on this planet that would willfully have a head drilled into his skull while awake to fake anything. People like this would not last 5 seconds having an attack before pulling the trigger.
Its ignorant for any person to willfully under estimate any disease without first hand knowledge of a disease. My dad had cancer. Throat cancer and survived. Had a full lyrengectomy and now speaks with a speaking aid machine. Although he is my dad and I lived with him surviving cancer, I do not know what its like to have cancer as I have never had cancer. Although I would be a child to only assume and comment whats its like to have cancer and only assume what he is going through, because I don't.
Ignorance plays a large part of this disease and Ill be the first to admit I never even heard of it before being diagnosed. I spent years trying get as much information to learn as possible, and now I just relay that information best I can. If someone tells you they have cluster headaches, episodic or chronic like me. Take them seriously. Believe them. Its not just a headache. Many of us look forward to the day we die. Its not pity we seek, its only understanding.
I highly doubt and bet my own life that there isn't a single Cluster Headache survivor in the world who wants pity. Most of us want to be alone during an attack, and perhaps understanding of what we go through and deal with on a daily basis. That is it. Nothing more, nothing less.
Assuming is ignorance. Judging us is far sicker than us. Get educated. If you don't believe me. Google the disease. Wikipedia it. YouTube it. Don't take my word as a chronic sufferer. Plenty of proof from world renown doctors neurologist and neurosurgeons and survivors out there.
This video is one excellent resource tool for educating non survivors, there is many more.