Awareness about invisible illnesses has recently come into the limelight over the past few years. When the phrase “invisible illness” comes up, people are quick to assume along the lines of depression, OCD and other disorders. However, there are many more illnesses, conditions and disorders that our friends, families members, or coworkers have gotten quite well at hiding.
One that affects my life and a small number of other American’s life is a condition known as Trigeminal Neuralgia. TN is incurable, but treatable to an extent. It is chronic and comes and goes as it pleases in terms of symptoms. It's comparable to a bad spouse in this case. Life's better when it isn't home, but when it is home, it rocks the whole house.
Trigeminal neuralgia is caused by the Trigeminal nerve (a nerve that spans the face) shooting off signals and causing sometimes excruciating pain. With this pain can come migraines, another silent pain.
I am fortunate to that I don't suffer from this, but my mother does and the things that this condition does is mind blowing.
Cue anxiety, depression, multiple emergency room visits at any time of the day, watching your mother cry and feel guilty for causing trouble (though she never could), shots in the spine, shots in the face, shots in the neck, pain patches made for cancer victims, clinical trials, neurology appointments, counseling appointments, not being able to eat, not being to speak, having to lay in bed for days, missing school events, having to plan trips around possible pain, visiting emergency rooms in different states, being called a hypochondriac, having your head shaved because having hair hurt, having migraines with stroke like symptoms, not being able to drive, having to call your daughter home so she can take you to a hospital an hour away, having to sleep alone because any movement hurts, other conditions arising from TN, medicine with life threatening side effects and worst of all, doctors not taking her pain seriously.
It's easy to assume that a frequent ER visitor is looking for some sort of fix, that's fair. It's easy to assume their pain is a withdrawal of some sort and in that case, it may very well be considering the copious amounts of painkillers they've tried.
But that doesn’t change the fact that someone sitting in that bed is feeling a pain that is indescribable, a pain that had pushed people to kill themselves over. Suicide headaches are very real, and they are terrifying to think of happening to someone you love and to watch a doctor simply brush off their pain as a regular headache is frustrating for the patient and the family that knows better.
I've watched my mother get treated like an addict in the emergency room. Those doctors weren't the ones who fought with her over getting some sort of relief for the pain that has had her bedridden for days. I've watched my mother get treated with absolutely no respect. It's common protocol for migraine or TN sufferers to want a dark room and a quiet voice. It's not that hard to leave the light switch off and speak gently. I've been pushed out of hospital rooms for asking doctors to not flick the lights on and yell, “good evening ma'am, how are you?”, when the paperwork in their hand clearly states there's a sensitivity towards light and sound. Pardon me, but I will embarrass both of us in front of your whole hospital staff if you choose not to treat my sick mother with the utmost care and dignity she deserves.
Myself and my younger brother know a lot about drugs now and while some parents may argue that's a danger, personally I think it's enlightening to know about the different things they are prescribed. We know what medicine can interact with what, when to take something with food or with water, and what can treat nausea as opposed to what treats simple pain. Knowing how these medications work and where they work is a knowledge not many people have unless they live around them on a regular basis. I know my mother cannot get too warm or a pain patch that she could be wearing can cause some unwanted effects, and my brother knows what to tell doctors what she's taken in case of an emergency.
I've seen my my mother age ten years in front of me because of a pain that no one can fix, pinpoint or see. I've watched family judge her for the large bag of medication she carries in an attempt to find the right combination for the headache she happens to have. Imagine finding a half of a shell on the beach and looking for the other half that could very well be across the ocean. Matching the medicine to the pain is like that. I've seen the looks she gets because of the IV marks on her arm. People are always quick to assume the worst.
In every situation life deals there's a silver lining. While my mom being in pain is not ideal by a long shot, there have been a few blessings that I've seen come out of it. The first being the community my mother is apart of. She's founded her own “brain pains” page as she calls it to document her experience. She's part of a group called "migraineurs", where they send secret Santa gifts such as soft blankets or nice pillows to each other, a small token of relief and to show each other that they are never alone. My mom has found solace in the kind hands of doctors who have looked her in the eye and said they their goal is to have her leaving the hospital feeling normal. With her being a nurse for a few years in the Air Force, my mom knows how things work and has had funny encounters with new nurses or doctors figuring out some sort of fancy IV. She takes pride in coloring her hair pink or purple for migraine awareness month and loves her service dog she takes everywhere to keep her calm in the case of of a headache or anxiety.
My mom shows me everyday that a little determination goes a long way, and to take value in the little things like being able to mop or do laundry, when just a few hours ago she was in bed. To be able to feel how she does and still find some comparison towards other people and the massive love for animals is something that I could only wish to be able to do. I've been taught to not be afraid to speak out if something is wrong at the doctors, even if I come off as rude, because end all is to be treated, if not medically, then at least with respect. In the end, that's all anyone with TN wants. Not everyone wants prayers or thoughts, though it's very kind. Respect and compassion go further than one would think in terms of those who have illnesses that manifest without an outward response.