Invisible Illness
There are some days I wish I didn't have pain, didn't have multiple medical problems, or have to be on so many pills. Thinking desperately how I want out of this body, out of this life, out from under the assumptions. What assumptions? She's fat, so that's why she's "sick". No, actually, I had all these fucking problems at a young age. The older I get, the more crap I have to deal with. The list is starting to get longer and longer, and I just want off the damn ride.
I was asked once, "What isn't wrong with you?" and "What [medication] haven't you been on?" I consider that person a friend, so I'm not offended, but in the grand scheme of things I can't help but bristle. So, I'm going to list them all.
Variant migraine with aura
Secondary tension headaches
Fibromyalgia
Osteoarthritis
Plaque psoriasis
Abnormal ECG
High blood pressure
Extruded disk L5-S1 (some nerve damage from that)
Non-specific autoimmune disorder
Vitamin D deficiency
DIMS sleep disorder (some phases are truncated or missing while others are prolonged)
Major depression
Carpal tunnel syndrome
Four of those I've had from a very young age. It's a chronic pain situation as an invisible illness. Yes, I do know that two of those would most likely be alleviated if I was a normal body weight. Don't you think I've realized this within the last 15 years of my life? I know who I am in the mirror. I'm someone who's overweight, losing her hair, and scars all over her body. I can't help but see the stark reality every damn day. Please don't remind me of that fact.
I'm accustomed to the pills, the doctor visits, the specialists, the therapy and the countless ways I have sucked our money dry with all of it. Do you think I like it? Do I feel guilty? Yes. I feel guilty. Instead of each of my daughters getting an extra shirt for winter clothing, I bought my over the counter medication that is prescribed by my neurologist. Those supplements are not covered by my insurance. I have an $800 copay every single time I have an epidural series for my back which is every other month. Every three months is a $650 out-of-pocket cost to have botox for my tension headaches that is injected by a neurologist but isn't covered due to botox deemed "cosmetic". I want so desperately to have an easier life at times. Not just because of the pain I endure, but rather the fact it costs so damn much to have normalcy.
Here's what really irritates me. Everyone seems to have advice. Everyone has an opinion of what I should be doing and not doing. Ready for the latest round of comments? Here we go...
If you quit going to doctors, they won't find anything wrong. Doctors want to make a lot of money and will find things wrong with you to that end.
Wow! Why didn't I become a doctor? I would be able to make millions by diagnosing people with all sorts of conditions they clearly don't have. That's ethical, right? Then I can just order all sorts of unneeded tests and force my patients to come back in so I can make up something that's wrong with them.
I take Excedrin Migraine or Aleve for my migraines and they go away. Have you tried that?
No, dumb ass, I decided to take all these other expensive medications instead of just going with the over-the-counter remedy. Thanks for the advice, but I'd rather take something that actually works for my type of migraine that I've had for the past 32 years.
If you just think happy thoughts you won't be depressed.
Ah, my favorite one of all. Don't you think I would have tried that by now? Nah, I'd rather struggle to get out of bed in the morning, let alone get dressed, and want to die every waking second of my life. That's much easier.
You mean you have to be on medication the rest of your life? I'd just stop taking it if it made me feel bad.
Yes, I do! I'd rather be on medication for the rest of my life than be in pain, suicidal, and self-injuring. I will deal with the nausea, sleepiness, dry mouth, being light headed, sexual dysfunction, and weight gain if it means the difference between wasting away in a bed, waiting to die and being functional. I will take the two migraines a week compared to the daily 12-hour migraines I used to have. I will gladly take all that crap if it means I can sit upright, enjoy a hug from my daughters, set goals for myself, and grow as a person. I will take it if it works.
It can't possibly be that bad. If you put your mind to it, you'd be fine.
I'm not suffering from Münchausen Syndrome. I'm not faking it. I'm not doctor shopping. I don't love the idea of having to go to all of these doctors. I don't like the idea of spending all my money on treatments. I don't enjoy having 12 injections of botox into my forehead. I don't like have a needle jabbed into my spine to deliver steroid and marcaine just so I can walk 25 feet without needing to sit from the pain. I have laid in bed at night as a teenager, crying because I wanted my migraines to go away. I begged God that I would be good if he could make the pain go away. I gently cupped my hands at night from the pain, sobbing because I wanted it to go away. I have begged, pleaded, and tried everything to make it all go away. So far, it hasn't worked, and I've had no choice but to accept it, adapt, and move past the wishing for it to be gone.
Now that I've gotten that slight rant out of the way, I want to mention that just because you can't see any disability, it doesn't mean there isn't one. It's still a struggle in the morning to get my fingers and hands "warmed up" enough so I can get dressed. I have had to alter my life drastically since age 19. I need lever handles on all the faucets and doors. I have to have an emergency contact app on my phone that lists each and every one of my medications, and I've worn a medic alert bracelet for years. Some days it's all I can do to not scream as I bend my back from it's frozen straight position in the morning. I can't lift heavy objects. I can't even feel the tips of my fingers nor the tops of my feet or parts of my calves due to the nerve damage. I have to have an elaborate plan in case I get an aura while driving and can't make it home to meet the girls' school bus.
I've had to significantly adapt how I function in life. I'm very lucky in that for right now, this is the best I have ever been able to function. Many others with similar challenges don't respond as well to medication or lifestyle changes. It's not easy. I've found many others who are sympathetic on Twitter. One in particular, Michael Webb, @spudrph suggested I read a certain blog about having an invisible illness. It's written by Christine Miserandino. It's The Spoon Theory and describes exactly what it's like to have a hidden illness. It's worth reading.
All that said, I'm so frustrated when I'm only known by my disability. All I want is empathy. I don't want to be known solely as the sick girl, that woman with the migraines, that mom with the back problems, the friend who's depressed all the time. I can't forget I'm dealing with health issues, so I certainly don't need you to remind me. As if I could ever forget.
I want to be known as the artist, the creative woman, the funny mom, the sensual MILF for lack of a better description! I'm me! Get to know the other side of me, but be considerate that just because you can't see I'm hurting, doesn't mean that I'm not.
Oh, did I mention I need glasses for the first time in 40 years? Bifocals for astigmatism. Not another damn thing. Life just gets better an better. I think I might need to rethink things and go for that sexy librarian look after all. (wink)
Posted by kitterztoo at 11/9/2010 11:28 PM 
Categories: Facets of Me, Twitter
Tags: pain chronic migraines blog Invisible fibromyalgia migraine chronic pain twitter struggling illness
Categories: Facets of Me, Twitter
Tags: pain chronic migraines blog Invisible fibromyalgia migraine chronic pain twitter struggling illness
That reminds me of what I say when people ask me what supplement is safe to use for weight loss. I gesture to my own body and say, "There isn't one. If there were, I'd take it."
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I have no sympathy for you on the glasses. Once we're over 40, we're doomed. Ha ha.
Good rant. It's important to get the frustration out.
I'm with ya.
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I think it's the shock of having to go from no glasses, to having to wear them all the time. This is going to be an interesting change for me. Can't even wear contacts...according to my prescription anyway.
Ah the joys of aging.
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