I think my story is unique compared to others because, first, I have Hemiplegic Migraines which is considered rare by the Department of Rare Disease. Second, my husband was diagnosed with RP Usher Syndrome a degenerative eye and hearing loss disease which is also considered rare by the Department of Rare Diseases. Third, this makes us both caretakers.
My migraines been with me for as long as I can remember, so I have no idea what the so call “normal” is to compare to, so I adjusted and accepted this lifestyle since childhood. My outlook on Migraines might seem somewhat irritating to a newly diagnosed migraine patients because I dont find it a big deal to live with because I really don’t know of any other way.
Someone like me, who’s dealt with the disorder for 63 years, kind of left me out of the social support groups due to my outlook on the disorder. I’ve learned how to make HM my partner instead of my enemy. In a weird distorted childish way Migraines became my friend, I could count on them to be there, they understood the pain and they like me regardless, spending as much time with me when no one else would. During those years, plus the years I’ve spent with my husband, traveling across the USA with his guide dog, I learned some of the most valuable lessons about people. One being, you’ll never get someone to truly understand what your dealing with when it comes to illness. (I been married to a blind man for 42 years and I’ll never understand.) Half of society is compassionate, empathetic and caring the other half care for no one but themselves. You can spend a lifetime of energy trying to educate them, but they are totally incapable of any emotion that doesn’t involve them. It is a waste of valuable energy that could be used in other important areas such as the patient’s mental health, so they can learn how to deal with such issues. I’m a firm believer that the disease does less harm to the body then depression. Uplifting your spirits and appreciating yourself is a extremely difficult task when suffering from debilitating illnesses. Learning how to love and except those who don’t understand isn’t easy.
Nor is it easy to spend years as a caretaker, one who is expected to live everyday of “THEIR” life in the world of the effected patient, who doesn’t want the illness themselves, but they expects the caretaker to live in it with them. The caretaker is expected to willingly sacrifice their life to their partner who became ill and at times patients become reluctant to hear their feelings. Caretakers become invisible, under appreciated and targets of the patients miss directed anger. Caretakers end up living in the world of loneliness because of denial to entilement to their own feelings, it can’t be as emotionally painful as the patient who suffers.
Illness, no matter what it might be, comes with bags of complexities associatd with mental health and it’s extremely important that those issues are addressed and cared for just as much as figuring out which medications to proscribe to cure the illness. It is physically exhausting for patients to be expected to also educate society on their illness when their everyday struggle is to cope with the fact that this is their life now. In my lifetime I found inundating people with to much information opens the door for them to say things that infuriates me or it makes them feel I’m to complex for them to involve their energy into knowing, which defeats the “educating” experience. ( sometimes it make them uncomfortable and fearful they might offend you unintentionally.)
As a child growing up with this illness, you learn to adjust, it’s part of who you are knowing no different. It’s been extremely hard for me to explain symptoms to doctors because what a doctor sees as abnormal is normal for me. I’ve adjusted to my right side being paralyzed, but it baffles doctors who never witness a Hemiplegic Migraine. But that’s ok, sometimes I like being their surprise for the day making their day interesting. It’s all about the way you look and approach the situation that determines the outcome.
I feel very blessed to have the opportunity to climb this mountain and see all sides of illness. I’m not overly judgmental on those who are thrusted into living in this complex world of disabilities. I’m not devastated of the loss of life, but grateful for being allowed to live. I no longer feel resentment and anger because it locks you into a deep pit of isolation and disparity. Until you can learn how to forgive your body for betrayal you’ll never ever be truly free to live with a crappy body but a happy heart, which is far more important then the disorder/disease. Some might see my world as small isolated, but I see the few involved in my life very rich, exciting and fulfilling. Only your perspective will depend on how well you’ll cope with the life you will live.