Chronic Illness

I have a friend with Rheumatoid Arthritis (RA).

My mom has it too.

RA is an invisible illness. People with invisible illnesses have no visible symptoms, so many folks don't understand why they can't do all the things that most people can do. There is some sort of spoon theory that they use to try to explain it; long story short, people with these invisible illnesses only have so many spoons to get through each day. They have to think about how they are going to use each spoon because they can't go get more spoons at the spoon store, and I can't give my mom or my friend some of my spoons to get through the day.

I found out my friend was thinking of a project involving spoons; she's real crafty and creative like that. I made it my mission in life to go find my friend lots of random spoons. I went to the local flea market hoping to find some spoons. I found a bunch of random spoons and bought lots of them for my friend's project. This made me happy.

Then, I got sad. I was sad because I can't give my friend any of my metaphysical spoons, even though I often have more than I need to get through my day. I would gladly give up some of my spoons for my friend or my mom, but I can't. That isn't how spoon theory works. Maybe some day, science will have the answer to that conundrum, but right now that is still "fringe science"; I get enough fringe science from my Sunshine, as he studies the neurophysiology of addiction.

I sat and thought about spoons, and I was sad that I can't give my spoons to those who need them. Then I had a moment of extreme giddiness over the saying we have in recovery about how "spoons are for stirring coffee." This is especially funny to addicts, because we have some insane uses for spoons.

Then I remembered that movie The Matrix. There is no spoon. This has the potential to take me down the paths of fringe science, but I get enough of that from Sunshine.

So rather than be sad about not being able to share my metaphysical spoons, or travel down the path of fringe science, I went shopping.

I went to an antique shop, and I bought some spoons. I bought some really neat, rather fancy, really random spoons. They are my gift to my friend.

See, I sat in a meeting last night with other recovering addicts, and I realized that the fellowship is all about the therapeutic value of one addict helping another. We addicts share our experience, strength, and hope with one another. We share our metaphysical spoons.

While I may not have an invisible illness that leaves me debilitated on some days, I do have a disease that can't exactly be seen. The treatment for my disease involves sitting around with other recovering addicts and sharing our spoons with one another.

While it may not help my friend get through her day better (physically) for me to send her some fancy antique spoons, I know that it will make her heart smile, and that's what helps her get through the bad days - just like another addict's experience, strength, and hope helped me get clean.

Today, y'all are part of my circle of recovery. Y'all share y'all's spoons with me, and that's some awesome shit.

And until fringe science catches up with us, we'll keep stumbling along the best we can. And I'll keep buying up random spoons for my friend.

There's this idea out there that you can believe yourself into being well.

Or that you somehow believed yourself into being sick in the first place. That all it takes is wanting to be better badly enough, purely enough, consciously enough, something enough for it to somehow "manifest" in your life.

The idea takes numerous forms. There's the curative power of prayer, the school of "get up off your ass and do something about it, you whiners" crowd, the "but you've got nothing to be sad about/tired from/allergic to" zealots. A million symptom-specific diets, holy water and snake oil, and the ever adorable  "oh we all get headaches/sad/tired sometimes, but you don't see me sitting around complaining about it" group.

They all have one thing in common.

They take a person's illness or disability and make it - not a medical condition or a failure of society to accommodate the needs of that person - a personal failing on the part of the individual. They all nullify our personal issues and needs and turn them into something we're doing wrong or not well enough. 

And I say bullshit.

This sort of blame, grounded in magical thinking, shows itself in everything from the old woman in the parking lot who yells at me for being too young to need a handicapped parking spot, to my sister explaining to me that all illness is rooted in "past personal traumas" and "touch therapy" might be the answer for me. It shows in personal stories of achievement, converts of former patients who swear by whatever method happened to work for them and preach about it now as if it were the One True Word. I'm happy for them, truly, but can't get over the amount of gall it takes to assume what worked for you and your illness must then work for me. Just because you started running marathons on a diet consisting solely of cough medicine and peach pits does not mean it would work as well (or at all) for me. Thanks for telling me about it; now carry on with your business.

But it's never that simple.

The fact that there is a peach pit and cough medicine cure out there, and I am not attempting it: that's unacceptable in society's eyes. I should be doing everything I can to fight against my illnesses, even if it's contrary to common sense, defies the constraints of financial, emotional or physical realities, and/or is the least likely antidote to whatever ails me, or could make my problem a million times worse.

Society gets to pick if I'm trying hard enough, and {Spoiler Alert} I never will be!

I was 15 when I first got sick, when I was nowhere near done figuring out what kind of person I wanted to be when I grew up. Everything I thought I knew about my world and who I was just... ended.  I wasn't smart anymore, because I would sleep through my classes, the time I should be doing homework, and miss weeks of school at a time.

I wasn't a dancer anymore.

After months and months of missing dance classes, on days I could drag myself there, I would go to the one class I thought I could manage, do a half-ass job and then curl up in the corner on the gymnastics mats to go to sleep. I'd gone from teaching three days a week and taking my own classes to barely limping through the basic warm-up at the barre. 

But no one told me to stop.

My doctors said I was very sick, but that I "shouldn't give in", that I should "do what I can." To teenage me that was like a challenge - "go until you can't go anymore." And that's exactly what I did. I worked so hard at school that when summer came around, I was bedridden. I still can't watch the show tape from that last year when I lost out on my first solo and instead hobbled through the one number in the recital I had. I nearly killed myself by dancing. Afterwards, laying in the wings, waiting for my heartbeat to slow and my vision to come back, I thought to myself, "Well, was that worth dying for?"

But I didn't stop pushing, because everybody told me I shouldn't. 

My family constantly told me that I just had to keep trying. My teachers said,"Surely someone as smart as you can figure out how to beat this." My friends nagged that I'd been sick long enough, already. I know that they were trying to be encouraging, but the only message I heard was that I had to battle until I won. That it would be like giving up to say that I might have to live with this illness instead of fighting against it. The doctors made sure I knew that if I started to "act like I was sick" I would only get worse.

"Don't give in," they would tell me, "keep fighting." So I did, for way too many years.

My parents were as ill-equipped to deal with our new situation as I was. Never mind that I was sick right then and it might have been important to deal with. Nope, it was always about the fight, so we spent a good portion of what was left of my teenage years fighting against the Chronic Fatigue Syndrome, and often against each other.

When it got to the point that I couldn't eat and lost about 35 pounds like it was water weight, I can remember having screaming matches with my dad at the table. He would say such helpful things as "JUST PUT IT IN YOUR MOUTH AND EAT IT FOR CHRIST'S SAKE!!!" and I just... couldn't. It tasted like ash, everything did, and burned all the way down, where it would sit, heavy as winter boots until my belly revolted and back up it came. I would cry and he would yell that I was making myself sicker. 

We just didn't know.

Nobody gave me, or my parents, the skills. Maybe, with something like an aggressive cancer, the doctors would've been right on target, "Fight back, till its gone, take no prisoners, grant no quarter!"  But I had something nobody knew what to do with, a chronic illness with no known treatment, cause, or cure. So their advice was way off the mark. It was like I was diagnosed with CFS and instead of a treatment plan, with medications to take and dos and don'ts to follow, all the doctors told me was "You have it, but pretend you don't, as much as is possible."

And that was some damn bad advice

It was wrong and dangerous, and it could have been, on more than one occasion for me, deadly.  (Turns out ignoring pneumonia is potentially a bad thing, who knew?)

That's why this fallacy of magical thinking gets me so upset because it took a fifteen-year-old girl who could have learned the skills she needed to manage a chronic illness, and left her helpless, terrified, and vulnerable.

And blaming herself.  

I didn't have the skills, or the treatment plan, or the answers, but everybody kept telling me that they were out there. Keep trying till you find The Cure. So I tried all the crazy shit that you think you are not desperate enough to go near: pills with high price tags and exorbitant claims, cleansings and fasting rituals, diets. I would do an hour of physical therapy every Friday that would take me until the next Thursday to recover from. 

It goes pretty far, you know.

You work so hard at convincing yourself that you're getting better, while your hospitalization rate soars and your immune system falters. You can laugh with the doctors about that "last bit of voodoo you tried" all the while you're planning how you'll scrape up the money for your next try. You can fuel that train with all of the self-hatred you accumulate when people tell you that you're just being lazy, or that you're faking, or that if you really, really tried, you could do it. 

In the end, it didn't matter how often I thought maybe this pill was helping or that I just had to make it through the next 14 sessions and the acupuncture would clear everything up. In the end, I was sicker than when I started, discouraged at myself for failing and certain that if I just tried hard enough, like everybody said, I could beat this thing.  

There's one certainty about the whole mess: It could have been better. 

My experience did not have to be as hellish as it often was. It didn't have to be as isolating, and full of blame as it was. Because everybody, from my teachers, to my sisters, to my grandmother who couldn't understand why I'd cry when she suggested I go to a faith healer, blamed me at some point. I'm not saying it would've been a land of rainbows and puppies, I don't buy into magical thinking now and my life is certainly pretty puppy-less, but it could have been better than what it was.

It isn't enough to wish it away; that wishes us away, too. It doesn't honor who we are to be told that we're just not doing enough to be well, or that we worried ourselves into being sick, or that if I looked on the bright side more often, I would somehow no longer be allergic to all of the contents of the natural world. It's bullshit is what it is, and I'm going to call you on it, now that I know it for lies.

Once I got past all that, I learned so many ways to make my life better. To make it more meaningful, to work towards not just marking time until I got better, but living through that time, because this is my life now.  It's a life with chronic illness, and yeah, I'd rather it wasn't, but wishing doesn't make it so, so get to dealing with it, because it's a part of my life, but it's not all that I am.

That's a truth I worked long and hard to find, that I'm not really a lazy, layabout who'd rather play on the Internet all day then get a real job. That 16 doctors appointments in the space of three weeks is more than enough, even if they're not giving me the answers I need. That eating french toast today instead of a salad like every other day, is not the reason I'll obviously never get better. To remember that there are reasonable levels of self-care and coping strategies, and then there's just plain false hope.        

That's why I talk about magical cures when they pop up in what I'm reading or watching. It's why I get into arguments with the people in my life who dole out advice on seaweed pills along with our shared breakfast. And it's why I'll keep talking about it here. Because somewhere there's a fifteen-year-old girl, with an illness she did nothing to cause and she can do nothing to get rid of. 

And she deserves to hear the truth.

Not the fluffy, secret-based philosophy of pseudo-cures and self-blame; but the facts. That chronic illness and disability are just another part of life, and you can deal with them, treat them, live with them, and even thrive with them - to the best of your ability - but you can't, not ever, think your way out of them.

Separately, mental illness and chronic illness are difficult to deal with. When they occur together it can be even harder.

This is her story.

Why is it that a man can shave his head and have no one comment on it, but if a woman is bald it is a huge deal?

It’s just hair. 

Most people I’ve run into since getting my new ‘do just ignore it. After all, if you don’t mention it, it isn’t there, right? The few who have commented assume I have some sort of cancer and start with the “I hope you’re doing okay. Is the chemo going well?”

I started by using a simple answer of “I don’t have cancer, I just got carried away with the clippers” and made a joke of it. Then I started giving a slightly more accurate answer of “it’s not cancer. I shaved my head because my lupus rash was spreading to my scalp and it’s easier to treat.” People don’t like that answer as much. It’s not funny, and lupus isn’t a “fashionable” illness like cancer is.

No one wants to think of rashes. Rashes are yucky and make you think of oozing sores and things like that. And my talking about it draws their attention to all the things they obviously try very hard to ignore, like the sores and scars all over my face that I am no longer bothering to hide with make-up.

Yesterday even that answer wasn’t cutting it for me and I went for brutal honesty. Part of it was that I was in a very bad mood and was too tired to go anywhere. Part of it was that I am sick of how our society completely ignores mental illness in all its forms. So, when confronted with the “cancer” comment from a former friend/acquaintance I haven’t heard from in years, I told the whole truth. “I don’t have cancer. My lupus rash - which you can see here all over my face - spread to my scalp and I had to shave my head to make sure it was just a rash and not worms coming out of my head. Being sick like this makes it hard to control my schizophrenia and I just had to be sure.”

Yeah, that conversation didn’t last long.

I’m not sure I really give a shit. It’s just hair. I should be able to shave my head without it being a public issue. I shouldn’t be shunned because my illness isn’t “fashionable.”

Friends and strangers come out of the woodwork to rally behind you if you have cancer, but most of those same people will turn and run if you mention schizophrenia or bipolar disorder. This needs to change - and fast.

Unfortunately, those of us with mental illness are usually unable to stand up for ourselves. And our family and friends are too busy trying to pretend it doesn’t exist. 

We all do so much for other people. But do we do enough for ourselves?

Let's take a break for ourselves in March.

How do you take care of yourself, The Band? How do you manage to do the little things when life feels overwhelming?

I've never been the one to take time for myself.

Until it was too late.

For as long as I can remember, I've been doing for others. Taking care of my siblings, cleaning house for my parents, helping my stepfather input invoices when he got behind at work, playing June Cleaver to my first husband, raising my son, caring for my mother while she battled cancer, caring for my grandmother while she battled diabetes, cooking for my college roommates, caring for my future father in law as he recovered from a broken hip.

I did it all.

Then I couldn't anymore.

My health started to decline. RA took hold of my body and suddenly I couldn't take care of anyone else anymore, I could barely take care of myself. Over and over my heart broke as I had to ask for help with the simplest of tasks like opening a can of soda or a bottle of juice.

One of the best things I learned when I found The Band is that I can't possibly heal if I don't take care of myself. And that self-care can come in many forms.

Sometimes that means asking for help. Sometimes that means telling my friends and my fiance that I just need time to myself. Sometimes that means a bubble bath. Sometimes that means plugging in earphones and singing along to Meatloaf at the top of my lungs.

If I don't take these little moments for myself, I break. It happens suddenly and I'll find myself curled up on my couch or in bed with no idea of why I'm so tired, annoyed, spent, hurting. And each time I push myself past this limit, it takes me a little bit longer to come back to full speed. Or what accounts for full speed these days.

These days I'm still the one people come to for advice, a batch of artichoke dip for their party, or something crafty for a gift. I still love helping my loved ones.

I'm just a bit better at helping myself, too. And I have The Band to thank for that.

<a href="http://bandbacktogether.com/post/3721//"><img src="http://static.bandbacktogether.com/media/images/2013/02/Dose_Of_Happy_Monday.jpg"></a>

Relief.

As someone who lives with chronic pain, relief often seems a bit like the leprechaun's fabled pot of gold. It's a nice dream but highly unlikely.

Imagine my surprise, then, to find some welcome relief late last week. 

The manufacturer of my RA medication has a patient assistance program to help patients with low income and no insurance. I've been enrolled in this program since shortly after my diagnosis last year. This last month I had to reapply.

I've been on pins and needles waiting for news. This program saves us close to three thousand dollars a month. That's more than my fiance and I see in six months. 

Friday morning I got the news that I was approved for another year's coverage. 

And so, I'm happy. And relieved.

**************************

What's your Happy?

Don't think you have one? Look harder. Something will make you smile today. 

We want to know! 

Share it with the world on your blog and then link up below, tweet it out (hashtag #DOHMonday #WithTheBand) or share it on Facebook. Whatever you want to do, do it. Just find a bit of happy in this Monday!