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Okay. So I Just Found My Online Fam

I’m actually sitting here with a tear pouring down my cheeks and can barely see the screen. Part of my reason for starting this site was to have a place to talk about my pain. It has been sixteen years (!) since I have lived more than a week of a pain-free existence.

Since 1992 I have had problems with my back. And it’s hard for people to understand that I have tried just about every treatment under the sun, and that the thing that works for them when they throw their back out won’t work for me. The nearest thing to a diagnosis that I’ve ever had was spinal degenerative disorder, which to me is just a fancy way of saying that whenever I resolve a problem with my back it will creep back up again in three years, so don’t bother having surgery.

On top of that I have nerve damage that affects my extremities.

I don’t have health insurance, and even when I did I spent a considerable amount of time doing a little something I like to call “sucking it up”. Medications that are strong enough to take away my pain leave me unable to do anything else. Most aren’t even strong enough to do more than take the edge off, and since I build up immunity so quickly, I only take medications when I’m absolutely, completely desperate to stop the pain.

And I have been. On more than one occasion, I’ve considered ending my life just so I wouldn’t be in pain anymore.

Since I’ve taken such a stiff upper lip attitude towards the daily pain, most people, especially my friends and family, forget or ignore altogether that I have a chronic pain condition that limits my ability to do certain things. The one consistent exception is the sister who I’m visiting now. She’s always looking out for me, period.

Anyway. Living in constant pain, but looking normal on the outside has been an ordeal that has made me feel really alone sometimes. Today I was doing some Facebook research for a client when I found a group on Facebook called “But You Don’t Look Sick“.

And reading the description… felt like… have you ever been driving through a fog that came on suddenly, and the road turned, and suddenly the fog lifted? It felt like that, like suddenly I could see again, I was awake again, as if my black and white life was now in technicolor.

It was a group for people who have chronic conditions, disabilities or what they called “invisible” diseases. And if that wasn’t enough…

There’s also a website. ButYouDontLookSick.com is frequently updated with tips for all types of different ailments that fall under the invisible heading, from relaxation techniques to Spring Break ideas for the Chronically Ill College Student, it’s a wonderful site.

Even if you’re blessed with good health, it’s worth going to read to peek into the lives of people who aren’t. I guarantee you know someone who is sick but doesn’t look it, and you’ll understand them so much more if you read the posts on this site.

2 thoughts on “Okay. So I Just Found My Online Fam

  1. I cannot even begin to imagine how you are feeling right now. Chronic pain is usually ignored especially when the person concerned doesn’t complain about their pain. Another lesson learned is to never undermine or forget that people living with chronic disease actually have pain or some form of ADL dysfunction even when they don’t complain about it.
    My sincere prayers to you sis. Reading back your story from 2008 breaks my heart but I also have a strong admiration for your courage! I only hope and pray that your fight and unrelenting courage will produce positive results and you can truly live your potential without the constraint of disability. God bless you.

    • Thank you so much for taking the time to read my words and leave a comment.

      One if my chief regrets is not telling people, especially my family about my pain. I mean I told them. But for years I felt like I was expected to just stuck it out and pull through. I still remember the relief I felt the first time my mother acknowledged my pain in front of my siblings. And It wasn’t as big a problem then as it is now.

      Thank you so much for your understanding and prayers.

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