You know that person, that one who is always talking about her/his illness on facebook? You know every single time your friend is sick. You know when she’s missed work. You know when she has a migraine, hasn’t slept, is in pain; you name it, you know it. I’m sure by now you think it’s some kind of attention-seeking behavior. The person obviously wants sympathy. Right?
Not necessarily. Imagine going through life and starting at a young age having an illness. Imagine that this illness impacts your school life and teachers don’t believe you’re really sick. Teachers think you’re skipping school and everything is fine. You just don’t like cooking in home ec so you’re clearly missing because of that. Now imagine that this continues throughout life. You miss social engagements. You find it difficult to attend parties because of the noise and crowds, or the overwhelming smells. You have a constant migraine with very few breaks or good days in between. Fast forward 30 years and this is still going on.
What you feel is loss. You’re missing out on everything and even holding down a job like everyone else feels like a monumental task. Work days are missed all the time. It’s hard to pay bills, pay rent, and keep up with things. You finally get your gig working at home, miss fewer days because you’re away from scents and sounds while able to be in a lower light environment. Florescent lighting is horrendous on migraines. Your company is bought out. Now your new company dissolves all work at home. You start missing more work again. Driving to work gives you a migraine. Hell, breathing gives you a migraine. It really does. People wear so much perfume. (Insert any illness and trigger here.)
“It must be really nice to miss anytime you want.” – and not be able to pay your bills.
“It’s gotta be pretty cool staying home all the time.” – sleeping, restless, in pain
“If you are that ill, why were you on facebook?” – can’t sleep, can’t get comfortable, need a distraction.
People don’t understand. When you live 30+ years with a single, debilitating illness, it takes over all of your jobs, friendships, relationships. You probably missed out on time with your child growing up, playing games. You couldn’t run because it triggered a migraine. Sunlight triggered migraines so it was hard to go outside. You’re now perpetually low on Vitamin D, everything aches, and hey, you’re stacking on new diagnoses whether you want them or not. You go to the ER when it’s really bad because toridol is like God’s hand helping you to find relief. You’ve tried every drug.
The thing is, what you’ve learned over the last 30+ years is to apologize for the flaw in your existence. You apologize for missing anything. It’s not enough to apologize. You feel like you need to explain where you are. You missed work, but if you don’t post that you have another migraine, will people think you’re just skipping. If you hit Like on a public post because you’re lying in bed with your phone on dark with a blue light filter up really high and can’t sleep for the pain, you’re distracting yourself, will people not believe that you’re really ill.
You apologize for being you. You feel you have to prove your failures so people don’t think you’re faking it. Let’s not even get into the feeling that some probably think you’re a hypochondriac. It’s something you’ve had to deal with every single day since you were young. No one believed you. They could comprehend feeling this way all the time.
At the age of 11, the migraines began. When you’re female, this is often the gift of puberty. You’d love to focus on all of the cooler aspects of “becoming,” but really you’re just caught up in the painful assault your body is levying against you. Mine was two-fold. Migraines and endometriosis, though I wouldn’t learn about the latter for several more years. I felt it, but didn’t know what the hell it was. One more thing that to feel doubt over.
By the age of 16, my mom was fairly worried. We saw a neurologist. The neuro did the CT scans, the MRIs and all that. They discussed things I didn’t really understand at that time. It would have amounted to, “let’s monitor and if it gets worse, surgery.” The cerebellum was too low in my skull with risk at the spinal column. Chiari malformation possible. They could still see that on my MRI when I was 35.
They pulled me out of running in PE. Running was hell. Even running for a few minutes led to the most god-awful brain throbbing feeling one could imagine. I’d be in tears from the pain. It was that way for years. When you’re a child and a teen and you can’t run, people do make fun of you or think you’re lazy; Exertional migraines were due to the pressure. I didn’t really “get it” until I was older. When I handed in the note to my PE instructor that said I was to be excused from running (only running) they kicked me out of PE. If you can’t run, we’re not keeping you in. I could do a lot of other things, but due to an illness and inability to do ONE thing, I was kicked out. I had to figure out the credits for my graduation because I couldn’t get them for PE.
My home ec teacher is the one who said she thought I was skipping school on cooking days. I may not be the world’s best housekeeper, (I’m artistic, I clutter, and haven’t learned the art of keeping neat when I would rather draw) but I didn’t really care about cooking days. I was fine making thumbprint cookies and twice-baked potatoes. I was fine setting a table and learning all the finer little things. I can’t sew for crap, but I make doll clothing without a problem.
My ex-husband said he would have killed himself long ago if he had the migraines like I do. I lost my ability to have more children because of endometriosis and trying to be a pleaser. I do have one beautiful girl. Blessed. BTW, they don’t usually operate for your brain with this once you’re past 30, she said, because it doesn’t become worse after that. A lifetime remaining of all the same pressure on my cerebellum and migraines until I die.
https://migraine.com/blog/the-ins-and-outs-of-intractable/
Being accused of being a faker my entire life has had an impact on me. I do feel I have to explain where I am, why I’m not at work, what I’m doing home when I have a migraine and heaven forbid I post on facebook. I feel this urge to apologize all the time. I’m sorry I haven’t finished those coloring pages yet. I’m sorry that I couldn’t go to your weekend BBQ. I’m sorry I missed work and it’s a Saturday which is utter hell in customer service. I’m not missing because of that.
Getting older has introduced a lot of new symptoms and increased the frequency of the migraines. You end up trying everything. Spent Friday night in the ER with a very dear friend with me. Posted to FB that, yup, that’s where I was. Here’s a photo of my IV in case you don’t believe me. CT scan made me unbelievably sick, even though this migraine had very little pain and all the aura and illness. Here, let me prove to you that I was there. Yes, Saturday and still sick, only now full on migraine pain has arrived. Let me prove to you that I’m home sick because of how I feel. Let me excuse my existence. Might be written up or on a verbal on Tuesday. Hey, it couldn’t be helped. Might be hard to pay rent now. Hey, it couldn’t be helped.
When your friend is constantly posting about illness, when you’re tired of reading it, think of the behavioral training that person has probably had. Think of never, ever having people believe you. Think of giving up so much because you can’t fully participate in life. That friend isn’t likely seeking attention. That friend isn’t trying to get your sympathy. That friend feels like she has to apologize for all the times she’s failing and also has to prove why she’s failing. Every time.
