6. Projecting your personal “stuff” onto us.

Lordy Day, did I experience this when I made the mistake of telling anyone who was not me or my doctor that I was taking steroids to help control the agonizing, incapacitating arthritis pain that I was experiencing back in the spring.

I thought I was saying, “Yeah, my doctor gave me some Prednisone to help with the pain,” but apparently what everyone heard was, “I’m currently ingesting a special tonic composed of the leftover radioactive material from the Chernobyl disaster, laced with some accompanying drops of the dark black essence at the pit of Satan’s soul.”

Unfortunately, no one would ever just come out and say, “Hey, I’m concerned that you’re on steroids.” Instead I was regaled with many, many stories involving friends, family members, or someone they’d heard about while standing in line to pay for gas who contracted some kind of illness, stupidly took steroids, then found out that “that was the worst thing they possibly could’ve done,” and now they are crippled/maimed/disease-ridden/comatose/an invalid/dead FOREVER.

The implications in all of these stories were, of course, that a)I was an ignorant, reckless, idiot, who just leaped onto the first treatment plan that caught my attention without actually knowing what I was getting into, b)that I was selfish and inconsiderate for doing something that was clearly upsetting the person I was talking to, c)and that if I were a “good” friend/family member/whatever, I would immediately cease said upsetting action, and instead choose a treatment plan that they were comfortable with. You know, because my illness is all about everyone else.

Give me a fucking break.

It’s not like I just woke up one day and said, “Hm, what can I do that will recklessly endanger my health, as well as freak out the maximum number of people possible? I know-I’ll start using steroids!” I took that medication because I needed it. When it’s your turn to experience such excruciating pain that you can neither move your arms, stand, walk, or even get out of bed, then you can treat it however you want to. But I’m the one who had to live through all this stuff, and this was my choice. So BACK OFF!

Nobody but the sick person knows what they are going through, or what they need to survive. Telling horrifying stories to someone who is barely able to function as it is is just mean, especially when you’re doing it to “punish” them for upsetting you with their choices. Either come out and say what is bothering you, OR KEEP YOUR BIG MOUTH SHUT!

I really appreciate all the comments you guys have been leaving me the last couple of days, as well as the fact that my ranting has not driven you away.

If you’d like an additional perspective on this situation, the awesome Lynne Morrell has written a companion piece to this series which lists things you can do to help someone living with a long-term illness.

And so, without any further ado, I give you Part Three of What Not To Say:

5. Appointing yourselves as our personal Director of Information.

Attention healthy people: On behalf of chronically ill people everywhere, I would like to take this opportunity to tell you to STOP RESEARCHING OUR ILLNESS FOR US!

We have all the information we need, thank you very much.

We know exactly how sick we are. We know what treatment options are available to us. We know all the bad things that can happen as a result of our particular illness, because we are living through them every day. We are working closely with our doctors, and are following the treatment plan that works best for us.

It may not look like it from the outside, because we aren’t doing things exactly the way you would do them, but I promise: we are already doing everything that can be done.

Oh, and while we’re on the subject? Please also stop telling us about all the additional awful illnesses you’ve found that match the symptoms we are having. We already have enough to deal with; we do not have the energy or the resources to worry about something new that, more than likely, WE DO NOT HAVE.

This kind of research may be a nice, intellectual exercise for you, but it just causes massive stress for us. It is also frustrating to be treated as though we have no idea what we’re doing, when we are the ones living with this illness-not you-and all we are ever doing is working to get better.

So please, just keep this information to yourself, because we don’t want it. Otherwise, don’t be surprised when we strangle you with your own computer cables. Because you deserved it.

Alrighty then. Now that I’ve most likely chased off my five remaining readers with my intense and unfiltered pissiness, I guess there’s no reason not to keep right on going with it. So this morning I present my next installment in the ongoing saga of

The Worst Things You Can Say To Someone Dealing With A Long-Term Health Challenge

3. Expecting our recovery to be linear and predictable.

This occurs whenever we’ve experienced a handful of “good” days, and then suddenly go back to feeling bad again.

What you say:

-”Oh no-what happened?”
-”What did you do?”

What we hear:

-”What did you do wrong?”
-”Wow, how’d you fuck this one up?”
“It’s obviously your fault that you’re not feeling better anymore.”

Um, no-it’s not. Healing is messy. Healing is not pretty. Healing does not follow a nice, tidy, predictable path that you can plot on a graph. Healing has no cohesive form. Healing is primal and cuts right down to the bone. Healing brings up all the dark, nasty, unpleasant, icky places-that’s what’s being healed. Healing has its own timetable, and works on its own schedule. Healing doesn’t give a rat’s ass about when you feel you SHOULD BE WELL ALREADY, DAMMIT! Healing just goes right along doing its own thing, often in spite of you.

Having one good day means nothing, except that in that particular moment, we are feeling okay. It is no predictor of anything; there is no ongoing meaning that can be extrapolated from it. It just means that right now, we are feeling good. But there’s not one single thing, good day or not, that will prevent us from feeling utterly miserable in the very next moment. And, once again, that doesn’t mean anything either.

So whenever we’re out there, bashing around, trying this, that, and the other, feeling good, feeling bad, experiencing utter unpredictability, randomness, and chaos, remember: This is what healing looks like. Please don’t attempt to hold us to anything, because right now our lives are in constant flux, from one moment to the next. There is no constant for us right now.

4. Pushing us on

What you say:

-”I really think you’re on the upswing now.”
-”I’m praying for a complete and total recovery/miraculous healing/some other extremely specific outcome for you.”
-”We’re gonna get you back to your old self again really soon.”

What we hear:

-”You need to hurry up and get well.”
-”Where you are right now isn’t good enough.”
-”You need to be somewhere other than where you are right now.”
-”Only this Very Specific Outcome that I have completely detailed in my mind is acceptable for your ‘healing’; nothing else will do.”
-”Your healing has to look a certain way in order to be ‘good enough’.”

Oh my god, this is SO. MUCH. PRESSURE on us. Because, as I might have mentioned once, or twice, or eleventy billion times, we have absolutely no control over this healing process that is taking place inside of us.

We have no idea what anything will look like once we get to the other side of this thing. And feeling like we have to somehow make our healing live up to whatever it is that you’re expecting from us, sometimes just makes us want to stay sick, because that would be a whole lot easier.

We very much appreciate your care and support, but we really need it to come in a form that is much easier, gentler, and more open-ended. Statements like,

-”I’m holding you in the light.”
-”I’m sending you lots of love and healing energy.”

are very gentle, supportive phrases you can offer us, if you are so inspired.

This concludes today’s rant. We now return you to your regularly scheduled day.

I’ve learned a lot over the past 10 months as I’ve dealt with all of my ongoing health problems, but the one issue I want to address in my next few posts is this:

The Worst Things You Can Say To Someone Dealing With A Long-Term Health Challenge

Because unfortunately, I’ve had an awful lot of experience in this particular area of late.

And so, in no special order, here we go.

1. “How are you doing/How are you feeling?”

This most likely comes as a surprise to you, because you probably feel it is a sign of your care and concern to ask this question. But speaking on behalf of chronically ill people everywhere, this question just makes us feel worse. And I’ll tell you why.

Because we are shitty. And we are TIRED of having to talk about how shitty we are all the damn time.

So if you know someone who is living with a long-term illness, and you’re ever wondering how they’re doing, DON’T ASK! Instead, just go ahead and assume that they currently fall somewhere along the following Scale Of Shittiness.

10-we wish that we were dead; we don’t understand how someone can continue to be alive while experiencing such excruciatingly unbearable pain

5-able to get dressed and sit up, but not much else

1-able to function at about 50-75% of our pre-illness ability; pain is mostly managed, but still felt; and most likely we are having to deal with some new physical problem (migraines, allergies, infections, etc.) due to our compromised immune system

So remember, when you catch yourself asking us how we’re doing that, even on a “good” day? We’re still shitty, and we’re sick of talking about it. And when we’re not shitty any more, we’ll let you know. Trust us.

2. Asking us to mathematically quantify our illness and recovery for you

What you say:

-”So, did your doctor give you any kind of time line for when you’d be over this?”
-”On a scale of 1-10, where are you today?”
-”In comparison to [some other day], where would you rate this day?”

What we hear:

-”Why aren’t you well yet?”
-”You’re still sick-geez!”
-”What’s wrong with you?”
-”You must be doing it wrong.”
-”Please ’spin’ your process for me in a way that I can understand, and that will make me feel better.”

And, most especially, “It is really upsetting me that you are so sick, because it reminds me that this very same thing could happen to me/that I am totally powerless in this situation. But I don’t want to realize that, so you really need to hurry up and get well so that I can feel better. You need to stop upsetting me by being so sick.”

HELLO! We barely have enough inner reserves to wake up every morning and face the day. We do NOT have the energy to take care of your feelings on top of everything else, nor is it our responsibility to do so. If you’re upset by our illness, then go away and figure out some way to DEAL WITH IT YOURSELF! Our illness is not about you.

That’s probably enough for today. Stay tuned for more on this subject later in the week.

So you’ve probably noticed that it’s been kind of quiet around here lately. Even though I’ve been moving through so many different situations at what seems like the speed of light, for the first time in my 35 years, I seem to be out of words to describe what’s currently going on in my life.

I haven’t really known how to BE in this place, because always before, even if everything else fell apart, I could always fall back on a cushion of words to soften the blow. So I turned to one of my tried and true coping strategies, namely; “When in doubt, freak out.”

Because I am nothing if not generous, not to mention an excellent Drama Queen, I decided to share the freaky love with my coach during one of our sessions.

“GOD,” I announced, in my best, quivering, innocent-victim-of-the-universe voice, “God has taken all my words away! The one thing I most loved to do in the world, and now He’s taken it away from me for no reason!”

In what can only be described as a Superhuman Exercise Of Will which most likely led to severe internal hemorrhaging on her part, not only did my coach NOT laugh at me, but somehow she was also able to ask me helpful, non-mocking coachful questions to help me work through this issue.

“Well,” she asked, “does everything you write on your blog have to be funny?”

“Uh, DUH! YES!!” I replied. (Aren’t I just a dream client? Don’t you want to coach me too?) Fortunately she has raised two children, so she never takes snottiness personally.

“OK,” she replied, recognizing an Intractable Brick Wall Of Stubbornness when she saw one, “think about this. You had a plan for your blog when you started it three years ago. But you’re not the same person you were three years ago. Think about everything that has happened over the past year. So what if you could allow your blog and your writing to change, and reflect who and where you are now?”

She makes a good point. Especially given the fact that, if I had to give it a title, the theme of this past year would be,

I have hurt, in some way, every single day, for the past eight months.

Eight months of sickness, trauma, my life being completely out of my control, and pain.

One day last October I lost my health. Not because of anything I did or didn’t do. Not for any logical, rational reason. Just ‘cuz.

Overnight, I lost the ability to be the person I had been, and do everything I’d been doing up to that point.

This is the hardest thing I’ve ever had to deal with.

I never knew pain could hurt like this.

And even though I seem to have reached a place where the original illness is gone and the side effects are more or less managed, who’s to say they won’t show up again one day, out of the blue, for absolutely no reason at all? My body, my mind, my emotions, they are all tied up in knots and braced against more pain. Because I remember the pain. And I don’t know if I could bear to go through it again.

This was, and continues to be, a huge trauma for me. And I really don’t know how to be with it.

But I am still here. I do show up every day, even if all I do is open my eyes in the morning and acknowledge that I’ve arrived at the beginning of another day.

And maybe, just maybe, that’s enough.

As I believe I might’ve mentioned here once or twice, I have worked tirelessly through years of living with depression, only to emerge, hopeful and blinking into the sunlight, to discover that now I have to learn to manage an anxiety disorder. (As I am trying to make this a mostly-family-friendly blog, I’ll just go ahead and censor my reaction to this little discovery.)

You wouldn’t really know it unless you were my husband, and had to listen this every time you came to visit me in my office: “Oh my god, you did NOT just throw your dirty socks on my office floor, did you?! Oh, the pain! The burning! I’m m-e-l-t-i-n-g…”

I used to think that this was just one of my, um, “personality quirks” until I went to a new therapist and had to fill out an anxiety assessment. As in, “Does your need to clean interfere with your daily life?” (My Response: None of your damn business!) Also, there was an entire section that dealt with one’s anxiety in dealing with “fecal matter” (hm, can’t wait to see what kind of spam I start to get now), which made me feel a lot better about the fact that in 35 years I have never once changed a diaper, and as God as my witness, I NEVER WILL!!, bonding with any future nieces and nephews be damned!

The main way that this disorder manifests for me is that in my mind, whenever I’m reading a book, watching TV, listening to the radio, or listening to anyone speak, I am constantly counting the number of syllables I hear and gathering them into groups of even-numbered words that add up to eight syllables (as in, eight one-syllable words, two four-syllable words, etc.)

So I’m on this new medication to help ease all my symptoms of anxiety, and I’m eagerly awaiting the day when my mind will once again belong to me rather than my OCD thoughts, and then we bought the game “Brain Age” for the Nintendo DS. It’s this little regimen of activities to help enhance your brain function, and do you know what one of the training exercises is? That’s right-syllable counting.

Someone is actually lauding my crazy-ass mental disorder as a skill to be devoutly desired and actively pursued. In a competitive, timed game that rewards you, the quicker and more accurate your syllable-counting skill becomes.

Somehow, that just doesn’t seem right.

But of course I played it, because who wouldn‘t leap on the chance to actively flaunt what is, (unfortunately, in this case), the one thing they are best at in the whole entire world.

When you finish the test they rank your ability in terms of things that move, like a person walking, a bicycle, etc.

Can you guess what my speed was?

ROCKET. SHIP.

I can’t decide whether to celebrate, or to ask for an increase in my meds.

OK, Madeleine L’Engle was one thing.

I mean, she was almost 90, so her passing was not entirely unexpected, even if it does mean that we’ll never know what happened to Charles Wallace Murray, or whether or not Vickie Austin and Adam Eddington ever end up together.

So while I’m not happy about it, I can live with it, because at least all those characters were left in a good place.

But now Robert Jordan?

Have I offended you or something?

I mean, is there a reason that you’re slowly killing off all of my favorite authors, one by one?

Seriously, WTF?!

Thank you for your kind attention to this matter

Sincerely,

a devoted reader who does not care to have any more of her ongoing series abruptly cut off with all of the loose ends left hanging