Thursday, October 15, 2009

We Are Everywhere

There are good reasons why Chronic Fatigue Syndrome and Fibromyalgia are known as Invisible Illnesses. First, there's the fact that most of us look "normal" to people who don't know us. Strangers or casual acquaintances who see us out have no idea how much we're suffering or what a huge effort it's taking for us just to be present. Second, stuck in our houses for most of our lives, we feel isolated and invisible to the world outside.

I was feeling my invisibility acutely yesterday at Craig's soccer game. I'm still very badly crashed, but I dragged myself to the game and was sitting there, wrapped in a blanket and huddled in my beach chair (close to the ground to minimize the effects of OI), aching all over and probably feeling a little sorry for myself. All around me, I could see and hear the other parents, standing on the sidelines, talking animatedly to each other. It was obvious they all knew each other from school functions and other community activities that I usually miss out on.

Then, I struck up a conversation with the mom sitting next to me, wrapped in her own blanket and also sitting in a beach chair. Her older daughter had gone to middle school with Jamie, and her youngest daughter was on the opposing soccer team. Jamie was sitting next to me, also aching, in his own beach chair, and this mom asked him if he played soccer for his school, too. Jamie said to her, "No, I, uh, have some medical problems, so I don't have the stamina to play for the school team."

The other mom was immediately interested (unusual in itself) and asked what kind of medical problems. I explained that Jamie and Craig and I all have an immune system disorder (standard explanation), and she asked, "Which immune system disorder?" I didn't even finish getting the words "Chronic Fatigue Syndrome" out of my mouth before she excitedly replied, "I have fibromyalgia! And my middle daughter also has fibromyalgia plus lupus." And just like that, a bond was formed - we had each found someone else who gets it!

She and I talked non-stop through the rest of the game, practically finishing each other's sentences...

She: Did you hear the news about the new virus last week?
Me: Yes! wasn't that great?

She: There's this medication that works well for any immune system disorders. It's called low-dose naltrexone...
Me: I take low-dose naltrexone!

She: My daughter's knees have been really hurting lately. I'm worried she might have Lyme.
Jamie: I've had Lyme twice.
Me: I got Lyme last summer, and I'm still being treated for it.

She: Has this fall been bad for you? I've had terrible aches...
Jamie and I together: Yes! Terrible aches!

Immediately, she and I both knew we had found someone who understood, someone for whom we were not invisible, someone who really "got it." It reminded me of the way it feels when I discover a new friend through blogs or other communities on the internet who instantly understands me because he or she is living the very same life.

Something similar happened to me in June, when we attended a graduation party for a close family friend and two - yes, two - other moms there sought me out and asked me all about CFS because both of their daughters had undiagnosed mystery illnesses (both quite likely CFS).

We are not nearly as alone as we feel. It is estimated that there are over a million adults with CFS in the US (plus unknown numbers of kids and teens) and many more worldwide. I'm no expert on fibromyalgia, but I think the estimate for that illness is several million in the US alone. Next time you're out, look around. Chances are pretty good that someone else you see has been affected by CFS or FM, either in themselves or in a friend or family member.

We are your neighbors and friends. We are the parents of your kids' friends. We are the people you see in the doctor's office or (more rarely) in the grocery store. We are everywhere.

We are not alone, and we are not invisible.


  1. What a great post, Sue. You're right too! I'm glad you met a new friend.

  2. My sister recently had a stroke, and has been diagnosed with fibromyalgia since then. She was down for a wedding, and we were talking together. Suddenly, my mind went blank, and I stared at her for a few moments, mid-sentence. She suddenly burst out laughing, hugged me, and said, "Welcome to my world!" We laughed and laughed -- finally, someone who understood exactly what the other was going through. We're closer now than we ever were before.

    Yes, I know exactly what you're talking about!

  3. Thanks for posting this Sue. I've been feeling extra invisible lately for various reasons.

    How wonderful for you both that you met someone who suffers from this.

    I needed to read this today so thank you.

  4. I love this post, too!

    btw, have you found that the Naltraxine helps you? I've not tried it but have been curious.

  5. Pris -

    I meant to include a link in yesterday's post to my info on low-dose naltrexone, but I was just too wiped out to mess with links!

    here it is...

    If that link doesn't print completely, it was my April 4, 2008 post - you can find it through the monthly archives in the left column or by typing low-dose naltrexone into the search box.


  6. Thanks, Sue! I'm printing it out right now to read offline. I appreciate.

  7. Hi Sue. I've been combing the articles and posts from the recent NYTimes coverage, and I'm left with questions about LDN. Can't believe that in 20 plus years of treatment, this is the first I've heard of Naltrexone. I did read your post from last year about it. It sounded positive, but your recent posts give me the impression that it's not working as well anymore? Please let us know...

  8. Dear Amy -

    I guess it's time for a low-dose naltrexone (LDN) update - I'll post one soon. Meanwhile...
    Yes, I still take LDN and it remains the single best treatment I've ever tried for CFS in 7 years. It has given me about a 10-15% improvement in functioning capability. I also take anti-virals because I tested positive for HHV-6 and EBV. Anti-virals and LDN work well together, though it's worth trying on its own too.

    You're right - I've had a rough year, but that has nothing to do with LDN. I got Lyme disease last summer, which made me significantly worse for many months. My Lyme symptoms are finally gone now, but I'm still on antibiotics. And I've been in terrible shape this past month - probably due to exposure to the flu. Prior to this current crash, I went more than 30 days without a single crash day! LDN has given me many more good days and fewer crash days.


  9. Oh, what a great post Sue...there are more of us than we realize as we mostly endure in silence if not isolation.... So glad you were able to connect with someone else who son too...great for him I am sure.

  10. I have a friend who has fibromyalgia and I hate to see her in pain. Feeling invisible doesn't help your health or self esteem. I'm glad you were able to meet someone who can relate to you. :) I look forward to reading more of your posts in the #throwbackthursdaylinkup.

  11. Thanks for sharing with #ThrowbackThursdayLinkup again this week Sue. As much as I hate finding people who suffer from an invisible illness as I do, there is some comfort knowing that someone understands. It can be very isolating.