Posted in Journal, Conversation, Op-Ed

No Apologies Necessary, Dammit!

Photo by twinsfisch

So this week I had a dental appointment. But when I woke up in the morning, I couldn’t get out of bed. I had had another night with never ending pain and I felt traumatized by dawn. There was no way I could do anything more that day than lie in bed with my best friend, Audible. When I called to reschedule the appointment, though, I inevitably did something I usually do and hate myself the entire time I’m doing it. I lied. I mumbled something about having caught the latest crud that’s going around. “Oh, I know just how you feel,” the receptionist said. “I had that last week.”

I hate the lie. I feel that it diminishes me. But saying, “I have to cancel
because I can’t get out of bed,” or “I’m in pain today,” doesn’t sound like a valid reason. What would the receptionist have said to that? “Uh, okay…” and she’s thinking, “What the hell? Are you hung over? Your husband knock you around last night? Feeling a little lazy today with the rainy weather?” It just doesn’t work.

At a few different points in my life, I struggled with debilitating anxiety. But I never announced that I was having an anxiety attack. That was too embarrassing, too shameful. I’d always figure out a way to cover it up. And I’m certain that oftentimes, the cover up made me look less respectable than had I simply told the truth. Unfortunately, the truth was taboo. And all these years later, the truth still seems taboo. We must change that!

Having an Invisible Illness is bad enough. Having always to try to explain it is the icing on the cake. (Irony here, in case there’s any confusion!) It is generally not acceptable to decline an invitation, cancel an appointment, not go to work, insert obligation here, because we are depressed, in pain, have overwhelming anxiety, again, insert malady here.

It took a long time but my inner circle of very close family and friends now understand my key words: bad day, bed day, pain day, flare up. But I don’t know how to handle the rest of the world. The new couple we met and adored who want to plan dinner and the theatre when that show comes to town in 6 weeks. Let’s grab the tickets now before they’re sold out! The colorist who I’m dying to have do my hair (cute little pun there, huh?) but is so far booked out and frowns on late cancellations. I understand. She can’t afford to lose payment for that time slot. But getting my hair done is pricey, especially when I’m paying and not getting it done.

Yes, I know that I’ve cancelled on you three times in a row. I know it’s inconsiderate. I know it’s irresponsible. But I didn’t intend to do it. And the only other option is never to schedule or plan again. That’s rather bleak. One thing that keeps most of us going is having something to look forward to.

Yes, these seem like minor beefs. First world problems. But I’m still resentful. I’m resentful because I have this mishmash of medical disorders that can’t easily be understood or explained. I’m resentful for feeling as though I always have to apologize or make excuses for them. And I’m resentful for feeling less whole than the next guy because of it.

I, Jayne, am generally (I’m human, after all) not irresponsible, unsociable, irritable, needy, inconsiderate, over-reactive or thoughtless. My pain is. I am not my pain. Let me say that again. I AM NOT MY PAIN! And I want the world to stop mixing us up!

Posted in Journal, Conversation, Op-Ed

Invisible Illness

Photo by Raphaela Vergud

We must change the conversation about how we manage, understand and accept Invisible Illness and Disabilities. Invisible Illness is any chronic illness or disability that does not necessarily affect the way we look on the outside but may, and most often does, affect every other aspect of our life.  I say change the conversation but bloody hell, is there even one going on? We need to start the conversation!

I have an Invisible Illness. And frankly, I am bloody tired of being Invisible. An ordinary rainy Thursday afternoon nearly twenty years ago. A comic strip banana peel-type fall. Injuries to the spine. And a life changed entirely. Will it be forever?

Most people have no understanding whatsoever of how much energy it takes to manage a chronic illness. My injury should have been fixable. After multiple surgeries and countless therapies, I should have healed and gone on with my life. But that didn’t happen. For some bloody reason that I am still waiting to be enlightened about, my body did not heal. Oh the medical people have given me a list of things I can rattle off at a cocktail party. If I were able to go to a cocktail party, that is. I can spew conditions like Occipital Neuralgia and Fibromyalgia and Chronic Fatigue Syndrome and Advanced Arthritis and Advanced Disc Disease and Spondylosis and Severe Depression and Post Traumatic Stress Disorder and Chronic Myofascial Pain and Neuropathy and Chronic Insomnia and, well, you get the idea. Bottom line, I have severe chronic pain and dear God, it is exhausting to manage. Even when it’s not there. Sound nuts? I agree! But it’s true. Every minute of every day is spent thinking about the bloody pain. You want to just put it out of your mind and get on with it but that’s impossible. For every decision you make will affect that pain, either now or later. Do I go to the grocery store now or tomorrow? If I go now, I won’t be able to shower and wash my hair later and I have that dental appointment tomorrow. If I do laundry today, I probably won’t be able to make that pot of stew I’ve been planning. If I go to Kermit’s birthday party, will I still be able to help my mom with her taxes two days later? Something as simple as deciding what to wear and then putting on makeup, fixing my hair and dressing can feel as though I’ve just run a marathon. I almost never go out of the house two days in a row. Not every day is like this. Some days, I actually feel quite normal. But I am so shell shocked from the previous cycle, that all I do is sit on the couch or read a book. I think, I should get up and do something, but it feels so bloody wonderful to not have my body going crazy and attacking itself, that I just want to sit there and take it all in. The peace. The calm. Will it last 5 minutes, 5 hours, 5 days? Or 5 seconds?

There is so much that I want to include in the Invisible Illness Conversation. I have wanted to say this stuff for a long time but I have never known where to start. Where is the beginning? When I fell? Or long before that? Maybe it’s okay to just start in the middle. And then go back and forth as we go on. I don’t think my story is going to change the way the world thinks. But I do think that all of our stories can.

Perhaps you’d like to join me on this odyssey, this journey, this path to understanding, accepting and learning how to live after the acceptance. Do you have an Invisible Illness? Is it debilitating? But since you’re not without a limb or sitting in a wheelchair or obviously disfigured, no one seems to notice, or understand, or even if they do notice and understand, they forget to remember?

One of my biggest fears about writing all of this down and putting it all out there is to sound like a whiner. That old saw, and I don’t belittle it for it is profound, the one that goes something like, I felt sorry for myself because I had no shoes until I saw the person who had no feet. There is always going to be someone who looks worse off. And maybe they are. In spades. But that doesn’t mean that our pain is any less. That our loss is any lighter. Perhaps the person with no feet has found the way through the pain and has discovered a life that is livable. That’s what this conversation is really all about.

Just because I cannot see your Depression, PTSD, Agoraphobia, Deafness, Multiple Myeloma, Multiple Sclerosis, the list is endless, doesn’t mean that it isn’t just as debilitating as the guy who just survived an automobile accident or the one who is sitting in the chemo chair. Just because the blood isn’t dripping and the arm isn’t crushed and the breathing isn’t labored, and the cancer isn’t taking up residence doesn’t mean that our struggle, our silent struggle, isn’t as debilitating. We don’t have to be at death’s door to be dying. Sound melodramatic? Perhaps. But if you aren’t really living, aren’t you, in essence, kind of dying?

Let’s talk. Will you share your story with me? Please join the conversation.