Miss Understood:  Hope for the Best, Plan for the Worst

Miss Understood: Hope for the Best, Plan for the Worst

My life has felt like it’s been spiraling out of control lately. One day I feel absolutely fine and I’m able to get out with my kids, while on others I can’t care for myself. There’s never a happy medium. It’s either one extreme or the other.

As I mentioned in my last piece, I had been hospitalized 3 times in a two month time frame.

Arlene Grau

Arlene Grau

Let’s make that four hospitalizations.

Early one Friday morning I found myself in the worst pain imaginable. My fingers looked disfigured, I had a fever, and I felt as if every one of my toes was broken when I walked. I was having yet another auto immune flare.

That morning my husband packed my hospital bag, while I waited for the doctor to return our call about what we should do. It was like we already knew he would tell us, “Come in so we can evaluate you and have you admitted.”

It’s something neither one of us wants to hear or even say out loud, but we’ve learned that it’s better if we prepare ourselves for the worst case scenario instead of pretending like there isn’t something seriously wrong.

I used to think if I packed a hospital bag I was basically giving up hope that my doctor would be able to find a quick fix and send me home. It was like if I went in thinking I might be staying, then I must want that for myself. But over the years I’ve done away with that superstition.

It’s like when someone is waiting for test results. They hope everything is great and that they have a clean bill of health, but they also prepare themselves in the event they get bad news.

No one ever wants things to go bad for themselves, no one wants to hurt, and no one wants to be sick. But when all signs point in that direction, the best way to face it is by trying to cover all your bases in the event that something goes wrong. It doesn’t mean that you’ve lost your faith or that a miracle can’t or won’t happen for you, it just means you’re being realistic.

I’ve slowly stopped telling people that I’m in the hospital because I’d get responses like, “Again? You’ve got to be kidding me!”

No one wants to hear that from people who are supposed to be there for us.

At other times they’ve questioned why I already had my hospital bag ready — as if I planned the whole thing or wanted to be admitted. Or they’d ask how I got someone to watch my girls so quickly when my husband was away — not knowing we’ve had an emergency plan in place for a year now.

Sometimes I don’t know if my physical pain hurts more than the emotional pain I’ve felt from the remarks, ignorance, lost relationships, and sheer malice that others dish out. While I hope the family and friends who’ve supported me on my very difficult road remain a part of my life for years and years to come, I’ve also come to the realization that it may change at any time.

That doesn’t reflect upon my character. I’m the same person I was before I got sick.

It’s the people around me who end up changing.

Arlene and girlscropped1Arlene Grau lives in Lakewood, California. She suffers from rheumatoid arthritis, fibromyalgia, lupus, migraine, vasculitis, and Sjogren’s disease.

The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that! It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.


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Mea Cadwell

@Miss Understood: You said, “…the emotional pain I’ve felt from the remarks, ignorance, lost relationships, and sheer malice that others dish out.” I could not have said that better myself.

@ Dennis Kinch: Spot on sir, spot on!

Validation, in my experience after interviewing people, the single most important problem facing a chronic pain disease patient. Another issue that came up from this can all be wrapped up in the word “denial.” On everyone’s part. Because no one wants anyone close to them to go through bad stuff. That’s what denial’s all about.

As patients we complain in our minds that no one understands us, yet we try like hell to show everyone how “good” we can be, how well we are. We hide our sicknesses as best we can. Denial.
Our loved ones are afraid that if we get sick they will lose us and we are an important part of the fabric of their lives. They cannot face us being sick, in the same way we can’t face seeing us being sick. Denial.
It is our defense against a very stark reality, one that no one wants to face.

Of course, this is made 10 times worse when a doctor doesn’t believe you. This can cause so much damage, sometimes permanently, to our spirit and our self image. Your family’s in denial causing you to be in anger and depression causing the doctor to believe his own opinion. You are depressed.
Too bad the doctor doesn’t believe you and then sit down with the family in denial…and you, and explain the whole thing to everyone, as seriously as a cancer diagnosis, right away. (Any doctors listening? I had cancer so don’t tell me.)

Someday when this pain dilemma is understood, this will happen, right after you get diagnosed with “Pain Disease”, despite any other diagnoses you have. Then you would have to bring someone close to you to a “family validation” class. I did this 10 years ago and I thought then that it would hit the rest of the country soon. Ha! 10 years later and not a thing has changed. It’s very frustrating. This is why all we have as pain advocates is education and awareness.

So to anyone out there going through this same issue, please, please. Save yourself. Believe in yourself first and others next. Understand their denial, right after you understand yours. Do your studying, try things, talk to other pain patients. Not much to ask for love, is it? This is self-help time.

After 10 years I can honestly say, no one is gonna help you understand this, so learn it on your own. Or be forever doomed to falling down the deep abyss, your screaming trailing off as you yell …”but I really am sick, I really am sick…”, down to the bottom where there are no friends, no family, no one…but your lonely self. And the doctor counts his money.