I have been a nurse for almost 15 years. I was born to be a nurse really. When I was little, I can remember covering my baby doll’s arms in such a way that she would never feel too cold in my absence while at school.
I lived in a three generation household – where my grandmother suffered from Miatonic Dystrophy and my mother was chronically ill with an undiagnosed autoimmune disease. I had such mixed emotions of empathy, heartache and helplessness while watching these powerful women in my life suffer daily. And they did suffer. These strange invisible illnesses wreaked havoc on once bright, funny, dynamic women.
So, as I said – I was born to be a nurse.
It was about 8 years into my career, while working in the float pool at UCLA on an ordinary Tuesday that I noticed my arms felt quite heavy and weak.
Later, brain fog and memory loss became a real life struggle – and I used more and more complex note taking strategies to compensate for the loss.
The 90-minute drive home became a game of resting one arm in my lap and holding one up to the steering wheel, and switching to the other arm when the first burned with a fatigue and weight like I’d never experienced before.
Pain was the final blow. It started as a dull ache in my legs, feet, and arms — and within a few short months it was a screaming siren in my body drowning out all other sound. I was coping and compensating until the pain came. But I could compensate no more.
By this time, I had left UCLA – my mind and body broken. I simply could not take care of patients safely. I left my marriage too as it exhaled its final broken breath.
I came home, unable to work and licking my wounds. I quickly moved my grandfather in with me because he was dying on hospice. I laid endless days on the couch with him as we watched TV. My prescription pill box overflowed far more than his. And still, for me there was no diagnosis. Hope was also in short supply. Sadness overflowed and threatened to wash me away.
My greatest fear had become a reality. Like the women before me, I was now in my early 30’s, suffering from an invisible illness which, in one way or another, was at least partially responsible for taking almost everything from me. Almost everything.
What it did not take was the powerful force of nature called my family and my faith. My parents, brothers, friends and neighbors rallied behind me. They had hope and faith on the days when I did not — the days when I could only hurt and lay in a body being ravaged.
My children were loved beyond measure, as uncles and aunts took them to ballet and soccer and the park and the pool – as I lay helpless to do any of that. I am grateful beyond words for each and every one of them. There really aren’t words to thank them.
Getting a Diagnosis
A slow revolving door of doctors ensued. After my Grandfather died, I found work from home to accommodate my illness. After many years I had a soft diagnosis of Lupus, Spondyloarthritis and a few other autoimmune diseases overlapping the primary ones.
The invisible monster finally had a name, and with that name came what I needed all along: symptom management.
I began treatment with a pain specialist (among several others) and finally had control over my symptoms. My life opened back up again. It had become so small and boxed-in on my couch without answers. But good symptom management blasted out the walls of that tiny box. I thank God for medication that has given me back to me.
Have I had pharmacists ask personal and invasive questions when I fill prescriptions? Yes. Have I had to give urine samples like some addict? Yes. Have I had perfect strangers feel entirely justified to give me their uneducated opinions on some of my medication? Yes, that too.
But let me give you a little piece of nursing advice to my dear friends who are also suffering with pain and these injustices. Advocate for yourself. Stand up to their judgment and bigotry by offering to educate them about your disease. Offer to tell them your story. Remind them (with a smile on your face) of your rights to symptom management – the right to live the best possible life you can within the confines of your body and your disease. Express to them your genuine pleasure that they do not suffer as you do.
Tell them what a blessing those disease free days are and not to take them for granted. Speak firmly and with love. People will not hear us if we speak in anger. It only further justifies the pre-conceived criminalization of us already present in their mind.
Above and beyond all else – find love and laughter wherever and whenever you can. I have been so lucky to find love is in no short supply. Ask for help on the bad days. People tell me they want to know what to do for me, because sometimes they don’t know what to say. Pace yourself. This is a marathon – not a sprint. Be kind to yourself. You can love your body and yourself right where you’re at.
Love is really the best medicine, don’t you think?
Jennifer Peterson lives with her family in Seattle, Washington.
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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 represents 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.