Would you have enough compassion to listen to one more story of an invisible illness?

National Fibromyalgia Awareness Day - My Story, My Questions

Can I tell you I didn’t want to write this post? It’s not that I don’t want to raise awareness for fibromyaligia, because I do. It’s not that I want to sugarcoat the daily life of those with chronic illness, because I don’t.

I want to encourage others – not put the attention on me.  But here goes nothin’……

National Fibromyalgia Awareness Day

My biggest struggle is all the questions this invisible illness leaves me with.

Would you understand if I told you it’s different everyday? Some days it looks more like extreme fatigue, some days it resembles the way a boxer feels after the big fight and other times my clothes feel like razors scraping across my skin.

How can I explain that I may spend the whole day in the recliner because my energy was non-existent but lay in bed wide awake at 2 a.m.?

Would you be patient while I check the weather forecast before I say yes to your invitation? Because a change in the barometric pressure washes over me with levels of pain that make no sense.

Can I get you to understand that I may make plans one day only to cancel them the next? Irritable bowels, no energy, searing pain and a host of other symptoms can begin at any time. And do.

Would you understand me when I say one day it might feel like my arm is broke and the next day the pain will be shooting through my body in random explosions like the grand finale at the Fourth of July fireworks?

How do you describe what level of pain your feeling? People think that someone can’t possibly be at a level 7 or 8 without crying when they only think of  scale from 1 to 10. It’s hard to explain that when you’re at a level 6 on your best day you learn to act “normal” and it may be all you can do to get out to your car so you can let the tears flow as that 6 turns into a 9.

Would you understand that I don’t share every symptom with my husband or my kids? After a while you feel like such a broken record you don’t even want to hear yourself say it again, no matter how loving and understanding your family is.

How do you explain that you can’t remember the ONE item you drove to the store for or the fact that you have to re-read the same sentence in a book 25 times and you still won’t be able to understand the text?

How can I describe that some days a hug will feel like the tight grip of a vise but I still need them badly?

How can I explain that a change in my hormonal cycle can leave me literally writhing in pain all day?

How can I get someone to understand that one day I may feel good enough to go to the movies and the next day I have to have the TV, radio and all over noise OFF because the sound physically hurts?

Who’s going to believe me when I say taking ibuprophen won’t help?

When I hear people whisper behind me that they believe this is all in my head would it be rude to scream, “you’re right!” because it is? It’s a neurological problem where my brain confuses and amplifies any discomfort or muscular exertion as severe pain.

Do you think those that look at me as over weight would even care to hear that all three of my medications have weight gain as a side effect? Or the fact that if I walk around the block my body thinks I just ran a marathon?

Would you understand that this doesn’t even cover it?

Do you think some day people will understand that you don’t have to “look” sick to be sick? Leave a comment below!


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15 thoughts on “Would you have enough compassion to listen to one more story of an invisible illness?

  1. Just happened to have a fibro flair myself this week. Basically hibernated using heating pad and meds until it passed. Asking all of the usual questions – did I do something to bring it on etc. Tried hard bot to get angry with God, succeed 75%.
    I am blessed to have a husband that gets it. It is why I had to quit nursing not because of my CMT, It is real and I wouldn’t wish it on anybody. My recent post if your interested – http://job6-3.blogspot.com/2015/05/fibromyalgia-pain.html

    • Your husband sounds so supportive. I’m glad you have him. My husband is amazing with my illness and my kids are very supportive. Try not to question what you did to bring this on. We live in a hurting, broken world and that means we are susceptible to any illness and problems this world has to offer. (hugs)

  2. I feel like I’m reading my own diary here. Wonderfully put! I’m so sorry you’re going through this. If it’s any consolation, I know exactly what you’re talking about, and I understand you. xoxox

  3. Yes I understand, I will take a pain level of 6 any day and require handicap parking at times. More than once I have found notes on my car. You don’t look handicapped, You can’t see it on the outside. The days when fibro flair the worst and I just want to take my skin off. I have been known to lock myself in the bathroom, turn on the shower and sit naked on the floor crying. I don’t want my husband, daughter or granddaughter hear me again. Our families didn’t sign up to watch us in pain, personally I don’t remember signing up for it either. I read any and all information on chronic pain. There isn’t a lot of compassion or even doctors that fully understand why some of us are like this and others aren’t. Just thankful there is a forum like this to be able to go to where someone else understands! Thank you

    • Thank you, Linda! I had no idea you also had fibro. On my worst days I always try to remember there are those that have much worse situations than me. Although at the time it’s hard to think that way. I think raising awareness and gathering as a community of those with chronic illness is vital to our health. It’s where we can feel understood and share with others who don’t like to “burden” their family and friends every time as well. Thanks for coming to my blog – it means a lot to me to connect with you again. 🙂

  4. What a truthful and comprehensive ‘telling like it is’ essay that expresses my life as well. I love your writings the best of any I have come across. I thank you for your honesty, compassion to yourself and for others. It is not an easy road. I cannot seem to reach stability like I would like. Each day is well, whatever is presented to us on ‘a silver platter’ so to speak. Right when I think I am healed, I find that I am not. However, I am grateful for my life and not all is hideous, horrible, and unfruitful. This time away from the clatter of normal life has given me the precious commodity of time and has drawn me to the end of myself so that I could be healed in many other areas of my life. I will say that because of being down and out for the count, that I am Free and getting freer. Who knew this woman named Julie had to get mighty low to surrender to the mighty hand of God to be restored?! He doesn’t waste anything. My hope is that I will continue to improve in physical areas as well as I pace with grace.

    • Julie, I don’t know that I’ll every reach stability the way I would like either. My dad always said (during his long fight with cancer) that you just take one day at a time. There are some days that I even take an hour at a time. I think God’s love and power shines brightest in our weakest moments if we’ll allow it. So happy to hear your testimony!

      • It’s been a long haul through thick and thin. So many other issues to face outside of FM which is ever changing and ever present. At least our God is ever present but never changing, huh?! It’s been since 1996 for me with FM. I plodded along and pushed and shoved for the sake of my family. I guess I was in denial of just how bad it was in itself much less everything else. It all has been crazy complicated and no linear line of healing on any front. But I am stronger in the broken places and desire my life to shine for Him like you are doing 🙂 To tell you the truth, I am just finding out who I truly am–better late than never. And our lives and purposes have only just begun. Oh the glorious hope of days to come with Him! My husband was operated on (a whipple) for rare small intestine cancer. He went until age 40 before Celiac Sprue was diagnosed….irreversible damage evidently showing up in his latter 50s. Anyway, there were days I wish I had the cancer because my life was too hideous–I wanted a reason for the pain and anguish of living so people would understand and give me long-term comfort. Chronic illness that people do not understand or care to understand must come to the forefront. Your essay did just that. My daughter just read—she had had compassion but now she understands the depths of it. I am grateful for what and how you shared for awareness. Meaningful for many lives….

        • Thanks Julie. So often I’ve thought it might be better to have some illness or disease that others could see. It’s hard when you look fine/not sick. The only thing I can do with this is try to be an encouragement to others. That way I know this illness wasn’t wasted on me. And maybe, just maybe, God thought I was strong enough for this “burden” and would try to show His love and power through it.
          Thank you for sharing with your daughter. Sometimes it takes words from someone outside of the family for us to really understand.

  5. This is such an excellent post. Thank you for sharing. I know it’s hard for non-sufferers to understand our illness but you have written in such a clear, concise way. I will definitely follow and share your blog.

  6. sadly, i can completely relate to this. it’s so hard to even explain what’s going on with my body…just when i think that someone gets it they say something like “there’s no reason to not take a shower*. there are days when just thinking about taking a shower has me on the verge of tears. it’s ridiculous.
    i seriously hate when someone says “you have to make yourself do things”. every thing that i do i make myself do it.
    i’ve been pretty grumpy for the past few days…i’m in the middle of a flare. now that i’ve whined i just want to say that i really enjoyed reading your blog. 🙂

    • I hope you’re feeling a bit better Sherlene. I think most people can’t possibly understand the limits placed on us by our bodies. I often say – chronic illness: you don’t get it until you get it.