Is Accepting Our Diagnosis a Good Thing or Bad Thing?

Is Accepting Our Diagnosis a Good Thing or Bad Thing?

September 26, 2016 | Posted in: Chronic Illness and Diagnosis, CVID

Like many, the early stages of my diagnoses were often fraught with a rapid, fluid exchange of emotions and thought processes. One day they were the end of the world and the next they were maybe not so bad after all. However, with each diagnosis, my processing window shortened, and I steadied myself more quickly.

I’ve always been a dichotomy. I am a woman of fierce sensitivity and intuition, but also a researcher. Long before I had a name for my plentiful set of symptoms which seemed to come within different subsets and clusters, I was a lover of medical journals and subscriber to online medical databases, searching the bowels of the internet, trying to determine for myself what my prognosis might be.

And when at long last, those names did come I was still that living, breathing dichotomy. I remain a woman of great faith and hope, who believes and yearns for the miraculous and yet a woman who listens when doctors speak, who researches and evaluates the data and options presented.

One of the names I’ve been given for the squirrely things my body does, the reason I’ve always been sick more severely, more frequently than others is CVID, (Common Variable Immunodeficiency Disorder). Perhaps, this diagnosis should have devastated me. However, I found such relief in it, such validation. It explained so much of my life.

Is Accepting Our Diagnosis a Good Thing or Bad Thing?

Getting the liquid gold

Not long after my diagnosis, I started IVIG. Because part of CVID is my body’s inability to make enough antibodies on its own to fight off disease on my behalf, IVIG is an infusion of these antibodies from donors. According to the IDF, a single dose of this liquid gold could contain the antibodies of anywhere between 15,000-60,000 people. Mind-boggling isn’t it? It’s also quite expensive, and effective. While it took a few doses, my quality of life is markedly improved as a result of IVIG. The frequency and severity of infections I experienced pre-IVIG have decreased dramatically. I could ever adequately express my gratitude to the donors who make this possible or to the doctor who finally spoke a name who made this treatment possible.

However, in all of my excitement, I never stopped to consider the permanence of this disorder. I was already fighting other diseases. I was elated at the thought of some quality of life improvement. I’m still elated and forever grateful for the quality of life improvement. However, IVIG is costly. My monthly co-pay is approximately six hundred dollars. And it is not without side effects. While the doctors and nurses I work with have been amazing to do their best to minimize a headache that can feel like your brain is now too large for your skull for three days post IVIG, as well as the overall flu-like feeling, it is there.

Currently, I have a PICC line, which is used for a daily antibiotic infusion as well as for my monthly infusion. As I sat with my doctor at my last appointment, he told me he thought it was time to place a port, as CVID was a “forever thing” and IVIG would be something I’d need to do lifelong. It’s not that I hadn’t been aware of this. I knew my body wasn’t going to spontaneously sprout antibodies on its own. And yet, a port feels so permanent, so forever. I’ve resisted it up until this point for this reason. I like my PICC line for the same reason. I like that the home health nurse can pull it out at any point. I like that it seems to say, “This is only temporary.”

You know as well as I do any time you have an illness of any kind attached to you, well-meaning friends, family members and folks you haven’t talked to since high school will appear from the woodwork to tell you what your outlook should be.

“You cannot accept this! You are going to beat this thing!”

“Don’t even talk about it. That just gives it power. You just have to have faith!”

“You just need to accept it. This is your new reality. It is what it is.”

“Just make the best of it.”

“You need to step up and be an inspiration to others.”

Once, when I was going through a particularly painful time post break-up and bemoaning my existence, my mom gave me a piece of advice, which has proven to be quite useful in this season of my life. She said, “You have to stop with this I just wish I had done this or I wish it had turned out like that thing. It didn’t. And you don’t know what’s going to happen in the future. What you do know is this is your life now. This is your reality. And you have to figure out how to live within it while you’re trying to make it better.” It was a slap in the face but it’s also been my approach to illness in these years. Yes, I always cling to hope and faith, but today this is my reality, and I have to live within that reality. Denial doesn’t get me anywhere. This is what my life looks like today.

So is accepting a diagnosis a good thing or a bad thing? I don’t know, dear reader. I do, however, believe learning to live within the reality of our today is a winning way to go, while we cling to the hope of a future with limitless possibilities.

Now, pardon me, while I schedule my port placement. And please tell me, having a port isn’t so bad, is it?

 

 

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7 Comments

  1. Melinda Viergever Inman
    September 26, 2016

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    Thank you for writing this! I’m still twisting and turning on the stake of a new diagnosis, and (you know how this is) they’re still diagnosing. I’ve got a pile of autoimmune stuff. All of what you wrote is real and exactly how it is. These are the ridiculous things people say to us, as if we wouldn’t be sick if we’d only tried harder not to be. Good grief! I’m blessed by your words!

    • Stacey Philpot
      September 27, 2016

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      Melinda,

      It’s so strange how they seem to come in a little bundle like the car insurance packages the girl from the Progressive commercial is always trying to sell isn’t it? I think people have to convince themselves it’s our fault because then it makes it less likely to happen to them.
      May your time at the new diagnosis stake be brief!

  2. Melanie
    September 26, 2016

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    Keep up the good fight Stacey. I’ve always thought knowledge is power, and it is so true with chronic illness. Yes, you have to do what you need to survive and hopefully heal. Over the years, I’ve been diagnosed with some doozies, one of them fatal after four years. That was over ten years ago. It was not what they thought. So, I say, yes accept, but listen to your body and your gut reaction. Jesus will guide us on the correct path to wholeness in Him. Thanks for sharing your heart on this issue. It’s encouraging!

    • Stacey Philpot
      September 27, 2016

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      Wow!! There’s a time I’m sure you were thankful the doctor didn’t know the answer. Yikes!

  3. Lanna Webb
    September 26, 2016

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    This is such a wonderful word! I can so relate to that moment when it sinks in that you have a forever condition. This was beautifully expressed. And your outlook is great the way it is – keep it up! 🙂

  4. Stacey Philpot
    September 27, 2016

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    Thanks for reading and for your encouragement Lanna

  5. Karen Mandel
    October 1, 2016

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    My heart is with you. Keep the faith.

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