Sunday, January 29, 2012

by Michelle Watt

Feel free to share this, post it to your blog, or whatever you think is right.

It is very difficult to write something as blunt and honest as this will be, without unintentionally upsetting or insulting someone. I would like to take this time and let it be known that my intentions of writing this are only for the best, and by no means do I intend to hurt anyone in anyway.

It does not matter what the name(s) of my disorder(s) may be. What matters is not the diagnosis, but the effects of living with a serious, chronic health condition.

First of all, an important term to know is "chronic." Chronic does not mean occasionally; nor does it mean often. It means always; never-ending; and relentless. There is no escape from an illness that is chronic, and oftentimes a chronic illness means a lifelong illness. That one speaks for itself, I think.

There is a different vocabulary spoken by those of us who live with such conditions.

When we say we are sick, it may mean a number of things. Most often, it means we are struggling with a flare-up, a relapse, or having a bad day in general. Then again, occasionally, sick means we've actually caught a virus like a cold or a flu; the kind that actually leaves us rejoicing slightly because it means we have NORMAL, treatable symptoms. Yes, that is comically pathetic, we know.

When we say we are going to the doctor, it's probably not for a check-up. Most patients with a chronic illness haven't had a regular check-up for years and years. Why? Well, when you go to the doctor multiple times a week, they have a pretty good idea on what your physical status is. Also, doctor refers to specialist ninety percent of the time. the only time we see our general physicians is when we are required to get a referral through them, or if we run into them on the street.

Next, there are the questions that friends, family members, classmates, teachers, co-workers, and even strangers will ask. We love you and appreciate your kinds, concern, and perhaps even your curiosity, but what we reply with is not always what we want to say.

1.) Are you sick?

What we say: Yes.

What we want to say: From a scientific point of view I'm always sick. (Refer to definition of 'chronic.') I might not be sick how you define sick, but yes. Yes I am.

2.) Are you feeling better?

What we say: Yes/No.

What we really want to say: Maybe compared to yesterday or five minutes ago, but I will never "'feel better.' (Refer to the definition of 'chronic')

3.) What's wrong?

What we say: I'm just not feeling well is all.

What we really want to say: Honey, I've been seeing doctors since the age of two and they still don't know what's wrong.

(A subtopic of this question is, "What happened?" This is always hard to answer for those of us who may be in wheelchairs, using crutches, braces/orthotics, and so on.You see, it's very difficult to explain why, for example, my joints dislocate for seemingly no reason, or why I'm limping or unable to move at all. Typically I'll say something like, "I was born this way," or "Oh, I'm fine," because it's easier than saying, "I have a number of chronic illness and physical disadvantages caused by a genetic medical condition that causes my connective tissue to be faulty, and connective tissue makes up the majority of your body, so yeah.")

4.) Are you contagious?

What we say: (Politely) No, of course not!

What we really want to say: Violence is not the answer...violence is not the answer...violence is not the answer...

One of the most important things to know about chronic illnesses is the whole pity thing:


No, chronic pain, discomfort, or dysfunction is not fair. It never was, and it never will be. We know this. You need to know this. Do not make pity noises or faces at someone who is dealing with a chronic illness. Don’t say “I wish it was me going through this,” or “I’m so sorry!” Yeah, we know. But the truth is, you don’t want to be going through this, and how can you be sorry if it’s not your fault? It’s no one’s fault. Don’t apologize.

Most importantly…

From those of us who live with chronic and invisible illnesses….

You need to believe us.It will seem absolutely unreal to imagine going through life the way we do. Life made up of neverending pain, discomfort, medicine, doctors, needles, hospitals… it goes on and on. We’ve lived our lives like this for so long and it still seems unreal on some days. And yet for the most part, we look perfectly normal on the outside.

Because of the rare few who fake having a chronic illness, we are put in a very difficult situation – if you can’t see it, how do you know it’s there? Nobody can see chronic pain. We can see what that pain does, but we cannot see what it looks like. There are no broken bones or open wounds

You know, I can’t even put into words how it feels to be called on lying about something like this. And we all go through it. There is always going to be someone who thinks we are faking, imagining, exaggerating, or even taking advantage of our illness to manipulate others.

To those who think that, the only thing we can (nicely) say is:

You poor, ignorant, fools.

Open your heart. Open your mind. We all have our challenges, and no one’s are greater than another’s. Accept who you are, and who others are. Appreciate everything you have, because it makes you, you.

And most importantly, love.

Just love.

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