Miss Understood: My Invisible Support Group

Miss Understood: My Invisible Support Group

I recently attended the 7th annual “Women in Pain” conference. I had been asked to participate in a panel of fellow pain sufferers to discuss how we reached acceptance and a new normal.

I didn’t think anyone would care to hear from me being that I was a lot younger. But by the time the conference was over I was overcome by so much sincere love and compassion from everyone, and realized I had just formed a new invisible support group.

bigstock-United-Hands-1589525Listening to the other women share their stories about pain and how it changed their life made me feel like I wasn’t alone. It was therapeutic for me and beneficial in countless ways. Although we may not suffer from the same illness, we are all united by a devastating truth and — as difficult as our life has become — we continue to move forward.

I didn’t have to describe the intensity of my pain because everyone could relate and knew first hand what it was like. Who I am was “normal” for once.

It amazed me that although these women suffered a great deal, they still had so much love to give. Then I realized that it’s probably because all they want is to be loved and accepted as well. But unfortunately so many of them are fighting alone.

I believe that even if you can’t physically be there for someone, the idea of being there, whether it’s via email or phone call/text, is just as effective. I know that if I had someone I could talk to who’s been where I was when I first got sick it would have made things a lot easier. Because I not only suffered physical pain but emotional as well.

So many of us, men and women alike, are silenced by our pain. We don’t want to be labeled as being dramatic or a hypochondriac so we try to continue as if nothing is wrong. All the while suffering on the inside just so that we’re accepted by our peers.

What this conference taught me is that you not only learn who you really are through pain, but who really cares and loves you unconditionally.

Now I have two forms of support, that of my longtime family and friends, and that of my fellow “sisters in pain.” I’m learning that just like others can serve as my strength I can also do the same for someone else. So my pain is not in vain.

My invisible support group is growing bigger than I could have ever imagined.

Arlene GrauArlene Grau lives in southern 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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Is there anyone out there who is living with RSD/CRPS?
For almost 30 years I’ve been managing this relentless pain. Over the years, it has spread to my whole body (to varying degrees).
In the beginning, it was mostly in my left upper quadrant and left hip and thigh area. That’s a brief history.
By the way, one of my main pain management techniques, apart from meditation, mindfulness etc is not to pay attention to it. However, if I’m not careful that can cause me to be severely incapacitated mainly in my upper body. Therefore, the pain has not “outlived its usefulness”.

Sweet Arlene,

You are one phenomenal woman – and one of my heroes!
You added so much wisdom and heart to our wonderful day – and you’re helping so many here with your beautiful insight.

From the bottom of my heart, sweet Arlene, thank you for all that you do – and I can’t wait to work together again ((*_*))

Love from “sister” Cynthia

This is beautiful. Any illness shows you who/what matters most, and which things in life are worth holding on to. 🙂 Thank you for writing.