Miss Understood: An Unspoken Pain

Miss Understood: An Unspoken Pain

If I was asked what my biggest fear was five years ago, I would have said “dying.”

That was when I was first diagnosed with my auto immune diseases. Now my biggest fear is having passed my conditions on to my children.

Arlene Grau

Arlene Grau

When I had my first daughter, who is now 6-years old, I was healthy. During my pregnancy with my second daughter, who will be 3 in a few months, I was in remission.

Both my girls only know one side of me, the “sick” mommy.

A few months ago my oldest daughter asked if everyone who’s 27 is sick like me.

I fought back my tears because I know she didn’t mean it maliciously. She had a good reason for asking me that question, because ever since she can remember I’ve been ill.

I love my daughters more than anything in this world and it would kill me to see them go through what I now go through on a daily basis. It’s easy for me to hide it from them. I can hold back my tears when they’re around and they don’t understand the severity of my diseases.

But if I knew either one of them had just one of my auto immune diseases I wouldn’t know how to keep it together.

A lot of the time people think of my conditions as only affecting me, but that couldn’t be further from the truth. It affects everyone I know emotionally and, as scary as it is for me to admit this, it may one day affect my children or their children.

The moment I realized that, I also realized something else. My parents have been living out my biggest fear. They’ve heard me say “I can’t go on” or beg them to end my misery. They’ve held my hand through it all.

How is it that they’ve been able to hold their composure? I’ve never seen them cry; they always give me the best advice and dig me out of my depression. I go to them for my strength.

Often times the patients point of view or experience is heard, but what some fail to consider is their parents. They suffer in an entirely different way, one no medication can aid with. Their pain is deeply rooted in their heart, but they don’t ever speak of it. At least my parents don’t.

I value my parents for their support and unconditional love. It’s easy for anyone to walk away, even someone who is a blood relative. What shows true character is staying through the good and bad. My parents stay because they want to, not because they have to. For that I am eternally grateful.

Arlene 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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I have a question. Do you have tons of sensitivities and allergies to foods, environment?
When I present the list of medications that I can’t take to any doctor they just look at me, like I’m lying. My list is detailed. With all the info. The doctor, the problem etc;
I had a doctor about 9 years ago who did not believe me. He gave me one of the meds I’m allergic to in a different name. Like an experiment. I took it not knowing and broke out into hives and wheezing.
He told me he dd not see that medication on the list. Told me I look fine. He was another Doctor that would give me an ANA test..
Do you give Doctors a list?
Thank you,