My Experience Only. YMMV.

Posts tagged ‘invisible illnesses’

Is My Pain as Real as Yours?

The other day I got a comment on a post I wrote a while back called “Who’s a Spoonie?” (https://wp.me/p4e9Hv-h6).

The commenter said that I was wrong to use the term “Spoonie” for those with mental illnesses. The kinds of disorders that merited the appellation “Spoonie” were only those that involved a “physical debilitating condition where pain and fatigue play major roles.” That I am not a Spoonie. That the language is not mine to use. That I am a part of the problem.

Let’s take a closer look at some of those assumptions.

Mental illness is not an invisible illness.

I wrote about that, in a post called “Is Bipolar Disorder an ‘Invisible Illness’?” (https://wp.me/p4e9Hv-gI). Disabled World (https://www.disabled-world.com/disability/types/invisible/) seems to think it is. Their definition specifically includes mental disorders:

These [mental] diseases can also be completely debilitating to the victim, and can make performing everyday tasks extremely difficult, if not impossible.

Bipolar disorder and depression are included in their partial list of “invisible illnesses.” And if you want to talk about “everyday tasks,” consider the number of bipolar and other sufferers who can’t get out of bed, can’t shower, can’t leave their homes, can’t work.

The condition must be physical.

To the best of our current knowledge, bipolar disorder and many other mental illnesses spring from glitches in the neurotransmitters in our brains. The brain, a physical organ. Neurotransmitters, a physical substance.

Pain and fatigue are required to play major roles.

Well, I’ve written about that too, in a post called “Depression Hurts” (https://wp.me/p4e9Hv-6Z).

My head and eyes hurt from all the crying spells. My back hurt from lying in bed all day. I had painful knotted muscles from the anxiety that went with the depression. I had intestinal cramps because my overactive nerves led to irritable bowel syndrome. I had headaches and eye strain from the over sensitivity to light and noise. And I had the general flu-like malaise that is practically the hallmark of depression. You know the one. Every bone and muscle aches, but you can’t think why.

Were these aches and pains psychogenic? Undoubtedly some of them were. But others, like the irritable bowel, were all too demonstrably physical phenomena.

Oh, and are they chronic? I’ve lived with them all for years. Not all at the same time, maybe, and not without times when the pain let up. But are all Spoonies required to be in constant pain and fatigue? Again, Disabled World says not.

The language is not mine to use. 

Sorry, but language doesn’t work that way. Once a word is released into the wild, it goes where it wills, acquiring new usages and new meaning. And “Spoonie” is certainly out in the wild. The essay that first defined it is all over the Internet. The suffix -holic has escaped from the word “alcoholic” and is now used for dissimilar ideas including “shopaholic” and “chocoholic.” Can we say, “No, you mustn’t do that. It must be reserved for alcohol addiction”? We might, but it’s not going to happen. Trust me on this. I have some training in linguistics.

I am part of the problem.

I suppose so, if you believe there’s actually a problem. In my post on Spoonies, I asked:

Isn’t that how Spoon language started – as a way to begin a conversation on what invisible illnesses are and how they affect our lives? Not a secret language that only those who know the password and handshake can use.

Obviously, opinions on the subject will vary, and mine is only one among many. I cordially dislike exclusionary language. Does anyone else want to weigh in?

What Is It With Showers Anyway?

Girl is choosing cosmetics in bathroomIt is fairly widely known that people with bipolar disorder and/or depression have trouble taking a daily shower. It’s not that we don’t know what’s involved in taking a shower, or why it would be good for us to do so, it’s simply that showering uses up a tremendous number of spoons.

Here’s what showering looks like according to Andrew Solomon, author of the now-classic The Noonday Demon:

I ran through the individual steps in my mind: You sit up, turn and put your feet on the floor, stand, walk to the bathroom, open the bathroom door, go to the edge of the tub…I divided it into fourteen steps as onerous as the Stations of the Cross.

I performed a similar exercise in one of my blog posts (Brain vs. Brain: http://wp.me/p4e9Hv-iF) and here’s my version:

First I have to find a clean towel and a bar of soap, get undressed without seeing myself in the mirror, fiddle with the water temperature, wash and shampoo, dry off, find clean underwear, and that’s not even thinking about drying my hair and figuring out what I can wear! Oh, my God, I’ve used up all my spoons just thinking about it! I should just eat Cocoa Puffs and go back to bed.

Now let me say, first of all, that I don’t really like showers. I grew up taking baths and have never enjoyed the sensation of water spraying in my face. But with my bad back and bad knee, getting up from sitting in a bathtub is nearly impossible these days. (Please don’t ask me why anyone would want to sit in dirty water. Everyone says that when I say I prefer baths. I have a nice long soak, steeping in the clean water like a big teabag, and only then wash up and get right out. Used to, I mean.)

To most people, showering is a single act that requires the expenditure of a single spoon. Take a shower; that’s it. But for those of us with invisible illnesses, each separate step may require its own spoon. Take something as simple as finding a towel, for instance. Go to the linen closet, grab a towel and voilà! Only a fraction of a spoon, if that.

But surely you don’t think I have had the spoons to fold and put away my laundry. It is all there in a jumble on top of the dryer. (Who needs a wrinkle-free towel anyway?) I have to root around to find one, and maybe twice if a cat has thrown up on the first one I pick. (They love sitting on clean laundry.)

If I have to go to a business meeting I force myself to use some of those spoons showering and getting dressed and acting respectable. But I will pay for it later, collapsing after the meeting in need of a mega-nap.

Now here’s a little secret I’ll tell you. Most people believe you gain spoons by going out of the house – walking in the fresh air, meeting friends for lunch, shopping, going for a drive (does anyone do that anymore?). But the fact is that, according to Spoon Theory, you get a certain number of spoons every day when you wake up. You cannot gain, buy, beg, borrow, or steal any more, not even by breathing fresh air. You can only spend them.

Given the mathematics of spoons, I don’t spend a single one that I don’t absolutely have to. Not going out? No shower. Have to go out for a loaf of bread or a drive-through meal? Wash up in the sink. If I need a shower between outings, my husband reminds me and facilitates by, for example, rummaging on the dryer for a clean towel and clean clothes or a clean nightshirt.

I need those spoons for doing my work at home in my smelly pajamas more than I do for the ordeal of showering.

Is Bipolar Disorder an “Invisible Illness”?

Empty Chairs Laid Out For Meeting

Yes and no.

First, a little on the concept of invisible illnesses. These are the sorts of afflictions that are not apparent on first looking at a person – conditions such as fibromyalgia, chronic fatigue syndrome, celiac and Crohn’s diseases, diabetes, epilepsy, lupus, Lyme disease, and many others.

Disabled-world.com says, “Many people living with a hidden physical disability or mental challenge are still able to be active in their hobbies, work and be active in sports. On the other hand, some struggle just to get through their day at work and some cannot work at all.”

Most mental disorders are invisible illnesses by that definition. There isn’t a sign around our necks that proclaims “Bipolar,” “Social Anxiety Disorder,” “PTSD,” “Depression,” or even “Schizophrenia.”  The word “Crazy” isn’t tattooed on our foreheads. Our mere appearance doesn’t give away our “secret.”

We have a lot of the same problems that people with other invisible illnesses have. Spoon theory, for example. For bipolar people, simply taking a shower requires so many spoons that we seldom go out. (I count myself among that number.) People who don’t know or understand Spoon Theory often don’t understand why we don’t accept their invitations or cancel at the last minute, or simply don’t show up. You lose a fair number of friends that way.

On the other hand, a mental disorder is not always invisible. People can see us burst into tears for no apparent reason, or go into the bathroom at a party and never come out. They can see our shaking hands, confused looks, and depressed expressions. They can hear our awkward attempts to socialize “appropriately.” They may not know what is wrong, but they can often tell something is.

When we realize this is happening, there are various strategies we try. We can leave the situation – entirely or partially (my go-to is to leave the room on the pretext of needing to make a cup of tea). We can try to brush it off or laugh it off (“Sorry. My nerves are bad today” or “I don’t know why I said that. Must be a brain-fart”). We can try the half-truth/half-joke (“Oops. Guess my meds just haven’t kicked in yet”). We can ignore whatever is happening and hope everyone else does too.

Or we can own it. “I have social anxiety disorder and need to be in a less crowded space than the mall.” “I won’t be able to go to the carnival with you because my PTSD is triggered by loud noises.” “I may come to your party if my bipolar disorder will let me.”

We can also address the subject when there isn’t a situation looming. During a phone conversation or an IM chat, we can let the other person know that we have a mental disorder – an invisible illness. It doesn’t have to be dramatic and dire. Casually may be the best way to handle it. “I know you’re wondering why I didn’t go to the movies with you last week.” “When I saw my doctor yesterday we talked about my physical health and my mental health too.” “You know that character on that show that has PTSD? I have that too, but it’s not exactly like on the show.”

If that sounds risky, you’re right. It can be. There will be people who still don’t get it. People who “don’t believe in” mental illness. People who try to brush it off. People who offer the latest vitamins or super foods or Eastern philosophy as the cure-all.

But you’ll also find people who say, “Oh, my brother-in-law has that too” or “Okay. But I’m still your friend” or “What can I do to help?”

So those are the choices, basically.

Take a chance. Or stay invisible.

Neither choice is right or wrong for everyone. Mental illness is very personal.

You decide.

 

 

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