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Jennifer’s Story (MCTD)

Jennifer's Story MCTDMy name is Jennifer Morneau, and on Wednesday, September 24, 2014, I was diagnosed with mixed connective tissue disease. I’m 36 years young, married, and have two amazing children, Ayden, age 9 and Jocelyn, age 6. The following is what I wrote the day after my diagnosis. I had to write because it was the only way to articulate what I was feeling. Here’s my missive:

Day one: I was tired and numb and spent most of my time today researching MCTD. Yesterday was “D” Day. It felt surreal, like I was someone else. If this was happening to someone I knew, I’d research and read. I’d form thoughts and carefully-crafted words to ease someone else’s worries. Knowing the stages of grief, I could be empathetic to their denial. My compassion would be offered with arms wide open, and I’d be their best confidant, even a crutch. That’s what I’m used to. It’s innate to be comforting and consoling. Alas, this was happening to ME. Not someone
else.

Why do I always feel this way in light of my anxieties? Why do I always step out of myself and become narrow-visioned? It’s like my periphery disappears and I’m stuck in a tunnel of myself. A tear ran down my cheek, but it was of joy or maybe sheer relief. A diagnosis in the form of an umbrella was given to every ailment, pain, bout of malaise that I’d been experiencing in the past few years. The rheumatologist called it mixed connective tissue disease. I couldn’t believe there was one name for everything that was “wrong” with me. So yes, relief. It’s not all in my head. I belonged in a category, to a specific group. I’m not really sure why my body, contained in its sera, held these antibodies. Even crazier, my body was making antibodies against its own cells to destroy those cells. I was my own worst enemy.

Current feelings: cynical, sardonic, nauseous. I’ve been dealing with this reflux thing for a few weeks now. I just ate two Tums and took my tramadol earlier for the pain now devouring my left leg. I need a better diet, I think. I had this Mexican pizza and Reese’s chocolate ice cream from Breyer’s. Ugh. Sour vomit, yuck, is shooting up in my mouth. I’ll lay down and hope I don’t actually puke. Soon enough, I start my meds, and I’m presuming the nausea will be constant. Hopefully, I’ll learn to curb my diet instead of entertaining this idea of being reckless. That seems like an asinine idea, the reckless part.

These stages of grief can be applied to situations such as diagnosis of a chronic illness or the end of a relationship and so on. My nurse’s training and education gave me a good understanding of exactly why I felt the way I did in light of the news. The five stages of grief that were first proposed by Elisabeth Kübler-Ross in her 1969 book “On Death and Dying.”

They are as follows:

1. Denial and Isolation
The first reaction to learning of terminal illness or death of a cherished loved one is to deny the reality of the situation. It is a normal reaction to rationalize overwhelming emotions. It is a defense mechanism that buffers the immediate shock. We block out the words and hide from the facts. This is a temporary response that carries us through the first wave of pain.

2. Anger
As the masking effects of denial and isolation begin to wear, reality and its pain re-emerge. We are not ready. The intense emotion is deflected from our vulnerable core, redirected and expressed instead as anger. The anger may be aimed at inanimate objects, complete strangers, friends or family. Anger may be directed at our dying or deceased loved one. Rationally, we know the person is not to be blamed. Emotionally, however, we may resent the person for causing us pain or for leaving us. We feel guilty for being angry, and this makes us more angry.
Remember, grieving is a personal process that has no time limit, nor one “right” way to do it.
The doctor who diagnosed the illness and was unable to cure the disease might become a convenient target. Health professionals deal with death and dying every day. That does not make them immune to the suffering of their patients or to those who grieve for them.
Do not hesitate to ask your doctor to give you extra time or to explain just once more the details of your loved one’s illness. Arrange a special appointment or ask that he telephone you at the end of his day. Ask for clear answers to your questions regarding medical diagnosis and treatment. Understand the options available to you. Take your time.

3. Bargaining
The normal reaction to feelings of helplessness and vulnerability is often a need to regain control–
If only we had sought medical attention sooner…
If only we got a second opinion from another doctor…
If only we had tried to be a better person toward them…
Secretly, we may make a deal with God or our higher power in an attempt to postpone the inevitable. This is a weaker line of defense to protect us from the painful reality.

4. Depression
Two types of depression are associated with mourning. The first one is a reaction to practical implications relating to the loss. Sadness and regret predominate this type of depression. We worry about the costs and burial. We worry that, in our grief, we have spent less time with others that depend on us. This phase may be eased by simple clarification and reassurance. We may need a bit of helpful cooperation and a few kind words. The second type of depression is more subtle and, in a sense, perhaps more private. It is our quiet preparation to separate and to bid our loved one farewell. Sometimes all we really need is a hug.

5. Acceptance
Reaching this stage of mourning is a gift not afforded to everyone. Death may be sudden and unexpected or we may never see beyond our anger or denial. It is not necessarily a mark of bravery to resist the inevitable and to deny ourselves the opportunity to make our peace. This phase is marked by withdrawal and calm. This is not a period of happiness and must be distinguished from depression.

Jennifer
Michigan
Submitted 09/26/2014

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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2 comments

  1. Hi Terry, I just found this website after entering several ailments in the search bar.
    I landed on your story & it rang familiar in my head. Your nursing seemed to allow you to understand your diagnosis. I have been researching mine for yrs even after diagnosis. My symptoms change & hang up me. The Raynaud’s, mouth ulcers, migraines, joint pain, anemia, scars from rashes, reactions to injections, sinusitis, dry everything, weight from meds/immobility, fatigue, fibromyalgia… These things are ever present. But the new stuff like degenerative disc disease, severe pain & numbness in R arm, split meniscus in both knees, 2 crumbled molars (from combined ice chewing for yrs of undiagnosed/untreated anemia & lack of any syliva!) And a sudden 30 lb weight gain from development of Cushing’s (hump, purple streaks and all!) due to steroids… Well, let me tell ya, this past 18 mmths has been a duzy!! Both daughters got married just as the Cushing’s went full blown! 12 lbs heavier than what I thought was my heaviest, at first wedding. Then just 9 wks later, I’m at a new high! Gaining another sudden 18 lbs!! And all of it documented & photographed for generations to come. Uggh.
    My diagnosis of degenerative disc disease after simultaneously splitting meniscus in both knees was thrilling! The new spine MRIs were ordered to make sense of pain in my right arm (my cane arm) that rund down to my hand, thusly making it almost impossible to hold my cane. Oh! The irony!! The defeat!! I think of my health& recollect that image of the Olympic skier crashing & tumbling into feet of snow & ice!!!
    But then I read your story
    I too know the stages of grief, full well.I too have been the “comforter & crutch” to Soooo many. Previous to the onset of crippling symptoms, I was an Executive for the top Fragrance & Cosmetic companies in the world. I employed & cared for over 200 beautiful people over my career. I’ve launched employees into successful careers that far succeed my own. Crafted work schedules to accommodate any needs that arose without questioned. Even trained & employed their youmg adult children, as well as my own. Watched my employees & their children graduate college and many even go onto post graduate work. Citing me as their favorite boss/manager to others. Some even using the skills to go into specialized fields of marketing sales and Social media.
    I also created & facilitated a grief support group for several years after realizing I was grieving, myself, after my 3rd 2nd term miscarriage (I would go on to experience 2 more) and finding nowhere to turn. It was a 11 week group based on an intro to & journey through those 10 stages that looped around in succession.I facilitated 6 full rotations, and got to see over 100 beautiful people go on to reintering their lives. I got to journey with them, as they went on to invite me to witness their celebrations & triumphs, as well as new griefs to grieve.
    So how’s it, that I read your story & realize I’m newly grieving?? I’m not just grieving, but if I’m to be honest, STUCK. Stuck in those mid stages & looping them. Anger, Denial, Bargaining, Accepting, Denying the next, Anger again, Barganing AGAIN…. And so on…
    I needed to read your story. Not just to connect to your experience, your pain, your determination, your brutal honesty & feelings; But those familiar but shoved out of sight STEPS. It’s why I’ve been mentally exhausted. I knew that new aspecs of my disease would make themselves known. I had even facilitated a Chronic Coloring Club of 12 friends, that I counsel about my very experience. But what did I do?? As I had Everytime my own experiences began to weigh me &/or my loved ones down? I did the same as you, stepped outside & viewed it all like I was watching a medical show on TV.
    So Thank You. Thank you for setting that Big 10 Stage in front of me. I’m not gonna pull the fire alarm & run this time. I’m gonna stay & be a part of the Revival of my Big 10 Stage Review. You may wanna hold those applause. It’s gonna be a hot mess.
    But Thank You, Thank You, Thank You! for waking me up to what I was really searching for from Google.

    • Oops! I meant to type: “Hi Jennifer…” I’m sorry. My brain is a bit jumbled today.
      So my many thanks were for you, for Jennifer!!
      (But thank you Terry too. I appreciate your entry too.)
      Ugh. My brain. Remember”This is your brain”… An egg gets scrambled then “Now this is your brain on drugs”?? Well, similarly, This is My brain with Autoimmune & Tissue disease!!

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