My Disease Is Invisible I Am Not

“When you have an invisible disease, your sickness isn’t your biggest problem. What you end up battling more than anything else, every single day, is other people.”
Heidi Cullinan

I live with an invisible disease every day of my life, it goes where I go, eats when I do, or can’t, sleeps when I do or don’t, is with me when I’m in pain, when I’m nauseous and vomiting, when I retreat to the dark and quiet place. It’s with me when I have cancel outings or family gatherings, it feels my despair and sadness at having to do so. And the loneliness and isolation that descends upon me, the times that hopelessness creeps in. You see my invisible disease is chronic migraine, it is always with me. It cares not that I have to cancel plans, or suffer pain, nausea, vomiting, stomach cramps, diarrhea, aphasia, alloydonia, sensitivity to light and sound, feel isolated and alone. It is just doing its job.

Chronic Migraine is an invisible disease, no one looking at me can say, “Ah yes, poor thing she has chronic migraine.” My disease may be invisible, but I am not. I have the same hopes and dreams, that every other well person has. I would love to get up every morning without pain. To be able to fully embrace the day, with no worry of impending worsening of pain. To make plans weeks and months ahead, without the caveat of migraine.  To be the person I once was, chronic migraine has changed me in so many ways. I lost the “old me” nineteen years ago when I became chronic. Medications and constant pain can do this to a person, I had to find a new normal. I am not invisible.

These are words I long to never hear again. But you don’t look sick, Ha, that’s because you don’t know how to read migraine eyes. Your pain level can’t be that high, doctor you need to learn more about chronic pain and how those who live with it everyday, handle it! It’s just a headache take an Advil, would you like me to knock you upside the head with an iron skillet. Then tell you it’s just a little bump, take an Advil? It’s just a woman’s thing, they’ll stop when you hit menopause. Right, and the Easter Bunny is real too! You’re just faking it to get attention. Sure, I love puking my guts out, the feeling of having my head pounded on by a hammer, light searing my eyes like acid, the sound of a pin drop like a gong, my speech garbled, horrid stomach cramps and having to hide in a dark, quiet room. I am not invisible.

Yes, my disease is invisible, but follow me around for a few days, I am not invisible. You will see the signs of my disease, they are not pretty, some of them are even a bit scary. You will see right away, that this is a disease that you would not want to live with every single day of your life. I have no choice, I was born with it, it’s in my DNA. But I strive everyday to live the best possible life with migraine disease that I can. I work closely with my headache doctor to form a treatment plan. My husband is extremely supportive, always has been, and I know that he will always be there for me. Just as I always be there for him. I have a strong support group online in the migraine community and some ties that are as close as sisters. I try very hard to be supportive, caring, encouraging and inspiring to others with migraine disease. I. Am. Not. Invisible.

“There is no exercise better for the heart than reaching down and lifting people up.”
John Holmes

Live with hope,

2 thoughts on “My Disease Is Invisible I Am Not

  1. I see you and I see your disease. Your blogs are truthful and so heartfelt. Thank you for telling it like it is. Until we are handed some magic wands, I’m here for you. And, you are there for me. 💜💜💜

    Liked by 1 person

  2. Mel,
    Exactly! To make it on this journey with migraine disease we all have to stand together and have each others back. We need each others support and encouragement. That is so very important.


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