Conquering Sjogren’s: Follow us on our journey to change the face of Sjogren’s

A Caregiver's Reflection

Posted on Wed, Jun 12, 2019

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CaregiverToday is not terribly different from any other day. The day begins... slowly.
Introducing a reference to time...not recommended.

Because there is no way to know how the patient will feel. Will it be a sick day? Will it be a pain day? Will it be both? Too uncomfortable for breakfast?

Questions.
Questions are not helpful.
Rather, just know what to do, know what to say.

And find the sunshine. Project happy thoughts. (no questions). Everything hurts.

The role of a caregiver is demanding, unselfish and ever-present. The role requires an ability to not just listen but hear and then measure the appropriate response. Because the patient does not want help with everything. They still want to preserve whatever bit of independence they can, why, because they have lost so much. The tendency is to react, to offer to do everything...don’t do that, the patient needs to retain any degree of independence they can.

It was not always like this.

The patient used to be able to do so much more. The patient was able to do everything. Clean the house, go for a run, take an exercise class, take a spin class, work in the garden, get-up-n-go, have a job, have a schedule.

Over the many years of battling Sjögren’s, so many therapies and medications have been tried. And while the disease chose its own paths of advancement, the therapies and medication side effects imposed their own blend of affect, interaction, ineffectiveness and ultimately uselessness.

The search for better and more effective treatment is endless. An infinite amount of time is spent reading blogs, web sources and drug explanations. Visits to specialists have become routine. The challenge in each encounter is to both cram as much background in as possible to set-the-table (mindful of the allowable 11-minute interval) then mine for gems that can be actionable, that can deliver hope.

Now, as difficult as managing the total body sickness, overcoming crushing fatigue, containerizing and filing pain, the sense of loss trumps all. The feeling of what was this body, what activities used to be possible, a job, housework, time with friends, time with family, possessing the energy to live...it’s all different, it’s not the same.

But. The patient looks fine.
What?
The patient looks good.
I know the depth of the battle, the dimension of sickness, the crush of pain, but no one else can see it. I know the effort to be ready-to-go is an extraordinary effort. Everything hurts. The shower water hurts. Standing on bare feet hurts. Food hurts.

And so we go places. We see people. And people ask the patient: “how are you?” “you look good!” “you look better.” “you sound better.” Hmm. Patient replies, “I’m fine.”

Next comes the judgment part. The patient looks good so the patient must be fine.

So much loss.
So many things have been taken away by Sjögren’s. Friends don’t know what to say, many stay away. Friends remain out-of-touch because they have been unable to listen, to comprehend, to empathize. And this may even apply to family. They arrive at the same point, unable to listen, to comprehend, to empathize. Then, when choices are made for travel, travel to locations that exclude the patient, the feedback is “we did not think you could handle it," or “we did not want to be a burden."

So much loss.
Sadly, family is precisely what the patient needs. The presence of family serves as fuel to flush the fatigue, to silence the body sickness, to file the pain away. Here is where you come to a fork in the road: to be honest with friends and family as to the level of sickness, the level of life’s change, or, rather, choose to withhold, to internalize, to privatize as insulation to prevent any further pain, the pain of loss.

Loneliness sets in. For the patient, loneliness that few, maybe no one, understands what living with Sjögren’s is like. No doctor, no specialist, no pharmacist...no one knows. The same holds true for the caregiver. Dare we say, “what about me?” Does anyone know what it’s like to watch a person you love slowly disintegrate? Does anyone understand the feelings we have, the helplessness, the fear, the hurt, the sadness, the guilt, the loneliness? We are bystanders with a close-up view of the tick-tock disease progression, the effect of treatment side effects, the expression of discomfort, of sick, of pain, yet powerless without tools to help.

I have used the term right-sizeto describe the types of activities we can do. The plans I make (suggest) are right-sizedto the level of ability of the patient. Forget the things we used to do, or more accurately stated, can no longer do, rather, “let’s go shopping,” “let’s go for a walk,” “let’s go to a movie.” As a caregiver, I have right-sizedmy activity to the mutually acceptable level of the patient.

And yet, we stay positive, we stay strong, we stay resolute because there is no other choice.

To all the caregivers out there, you possess the power to instill the seed of possibility, of promise and of hope. Smile.

This article was first printed in The Moisture Seekers, SSF's patient newsletter for members. 

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Topics: #ThisIsSjögrens, Sjögren’s, Care Giver Burnout

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