You Don’t Look Sick

Has this been said to you? Those of us chronically ill or injured have probably been given this all too common line, “You don’t look sick.” Or how about this one, “Well, you look good!”*

If we look sick, we are sick, if we don’t look sick we aren’t. Right? No!

Most people have five senses; taste, touch, see, smell, and hear. Now, we can mistakenly use our sense of sight to judge someone’s sense of touch.

An injured brain can not be seen. The brain is enclosed by the skull and a protective water layer called dura matter (both of which are damaged on me). Injured brains are felt.

Fatigue can not be seen, it’s felt.

We can’t judge a person’s sense of feeling based on our sense of sight.

This is why invisible illness is so misjudged ending up with the ill feeling very much alone.

I met a lady in my brain injury group whose teenage son suffered a severe traumatic brain injury after being struck by a car and then run over by a second car which dragged his body underneath it before stopping. When she arrived at the hospital she told me he looked to her like an alien. His brain was actually visible and he was so beyond recognition, she could only identify him based on the fact that he bit his nails which was the only recogizable part of him. This is probably the worst case of TBI I have ever heard of, and by some miracle, her son survived his brain injury but with many many deficits.

Yet, this is not the norm. TBI is typically an invisible malady. It effects all of life in so many various aspects most of which go unseen to onlookers. TBI is felt. Chronic fatigue is felt. Autoimmune diseases are felt.

We want to be well. We don’t want to wake up every day wondering what we have to do to just barely get by. We don’t want to tell our best friend we can’t receive her visit because we are too weak. We hate missing church. We want to get up, feet hit the ground running and get everything done while having strength and energy to play with our kids and make chocolate cake for dessert.

Not all ilnesses are visible, rather, they are hidden inside the intricate workings of our very fragile bodies that can easily become disfunctional living in this fallen world. While we may not look sick, believe me when I say we are bravely fighting every day and never, ever giving up….. and are courageously smiling and enduring through the pain.

Much love,

Viv 😍

*This post was written a long time ago. I’m no longer frustrated over the way people respond to invisible illness, but I still feel this post holds a few valuable insights worth sharing with others. ~Viv

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Author: Vivian

I'm a TBI warrior whose hope and strength comes from God.

95 thoughts on “You Don’t Look Sick”

      1. I generally don’t let anyone know I deal with RA as they don’t understand how it makes one feel from day to day. Just do what I can when I can and enjoy the best I can. πŸ˜‰

        Liked by 2 people

      2. I’m glad you told me as my dad’s cousin has it so badly that her hands are deformed. It’s so painful. πŸ™ I get that too @ not understanding…..makes it doubly difficult.

        Like

      3. Luckily I have a mild case if there is such a thing. My spine has been the largest issue so far. Four lower back surgeries with the last being spinal fusion of that and three levels of my neck fused also. But I am feeling great these days! So everyday a new beginning! Like I said Thanks for giving a voice to my feelings!πŸ˜‰πŸ˜Šβ˜Ί

        Liked by 1 person

      4. I have a profound respect for all things pertaining to the nervous system and spine. I am thankful you are having better days and are feeling great! That must encourage you a lot. It encourages me too.

        You’re very welcome and I’m thankful for your comments. πŸ˜€

        Liked by 1 person

  1. Sadly true.. one should not judge anyone just because they are staying strong and smiling through suffering! It’s necessary to understand and feel the pain they are hiding behind that smile! Keep smiling; God bless you, dear! πŸ’–πŸ’–

    Liked by 2 people

    1. Oh my, how so many judge. I’m much better about feeling hurt over it, and have moved on but I really felt the need to share this for others struggling to carry on in this unfair world. God bless you dearest!πŸ’–πŸ’šπŸ’–πŸ’šπŸ™πŸŒ»πŸŒ»πŸŒ»πŸŒ»πŸŒ»

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      1. Hi Vivian, the point I was making is that I gave up expecting people to be able to understand how I am feeling. This because they have no frame of reference to understand it from. As you said so well in your post. Just because you look fine doesn’t mean you feel the same. I can’t even begin to understand your challenges everyday. It must be so very frustrating to want to do more and not being able to. Stay strong and know that many are praying for you and support you.. πŸ’–πŸŒž

        Liked by 1 person

      2. Thanks so much! I do understand the giving up part. I have too in many ways, but I know God understands me even better than I do myself and that’s a huge comfort. The frame of reference you mentioned is so very true. I have lost some very close friends because of this injury and if they are to care or even try to sympathize a little will take an act of God.

        Liked by 2 people

    1. It really is. But God has helped me get over it and I am at peace knowing He understands. I am thankful for knowing you Ryan because I didn’t know how much Celiac Disease effects those with it but now I do from reading your posts. I’m not happy you suffer but comforted knowing you understand and “get it” when it comes to chronic health issues and that’s a huge comfort.

      Liked by 1 person

  2. Fatigue, depression and anxiety are some of the unseen symptoms I battle. I can’t recall anyone ever saying that I didn’t look sick, but nobody ever listens, (except Andrew’s mom, I think dad gets it now too) but yeah, it can be frustrating.

    Andrew’s cousin has both autoimmune diabetes, and Hashimoto’s disease, and she gets the “but you looks so good” all the time. Diabetes is scary. Not long ago her insulin pump stopped working, and she woke up in bad shape trying to search for her backup pump. Thankfully her son was there to help her look and found it in time. Yeah pretty scary. But this is the sort of stufff that people don’t see because when you’re finally able to make it out of the house they see you on a better day. It still doesn’t mean you feel good. I’ve had really bad headaches or depression at times. I usually stay away from people when I’m depressed if I can through, because it’s really hard to hide, and I hate it.

    Liked by 2 people

    1. I’m so glad your mother in law listens…..mine hasn’t I’m afraid but our relationship has always been strained.

      Oh yes, my dad’s a diabetic and I have hypoglycemia from my TBI. I always have to have food on hand. It’s a constant battle. I only get out IF I feel almost human and usually just say fine when people ask how I am. I know they are being polite but then they say, “well, you look good” if I try to explain which I no longer do. I’m almost getting the sense my friends or family are irritated or mad at me for being ill. They act upset with me. When I mentioned this to my PCP she was upset because of the massive amount of physical trauma I’ve endured and then the emotional trauma of people not being nice on top of it. She is afraid it may be a hinder to my healing.

      I am depressed off and on. Oh Tina, I’m so sorry honey. It’s no fun the emotional trauma from health issues…..it’s almost worse than the physical symptoms or harder to handle. I’m so glad we can support and love eachother through this though. It helps to know we’re not alone.

      Liked by 1 person

      1. 😦 I’m sorry that people don’t understand. That’s tough. I get really defensive when people don’t consider what others must be going through. Even something that Andrew said after we watched a movie got me defensive. I actually wrote this particular story out. I’ll share it on my blog soon. First I have a few other things to share, but I’ll get there. I am way ahead on my writing because fatigue has been forcing me to be in bed or on the couch a lot. Plus my emotions are all over the place. The battle is real! I see it on my face when I look in the mirror, but then that’s also because the emotions are a bit wacky. Ugh. I will conquer. Just maybe not so elegantly. I understand where you’re coming from. That is a blessing. At least we do have people around us that can relate. God seems to help us to find one another. ❀ Hang in there. I will too.

        Liked by 2 people

      2. I’m so sorry for the fatigue. When my adrenals were low it was a constant crash and burn, over and over again. It felt like a curse. I have several friends with adrenal fatigue and thyroid issues and it breaks my heart to hear this Tina because you were feeling better recently and then did you crash? I know how hard it is to be fatigued. It always gets me crying and then depressed which makes everything worse. My adrenals are stronger now but I have to nap at 1:30 every day or I can’t get through the day. I look forward to your post on the movie…..I look forward to all your posts Tina! Much love!πŸ’–πŸ’–πŸ™πŸ™

        Liked by 1 person

      3. Well, I think my biggest problem is that on top of Hashimoto’s I’m also in perimenopause. This has been confirmed by my doctor. I think I’m having more rough days than good days now, which makes life feel like an uphill battle. I know you know what I mean. It’s especially difficult when you do have a few good days, or even a week and then you drop again. Plus, I’m struggling to eat well because I’m so tired all the time. I’m trying to get more fluids in me too. Everything adds up. It’s just difficult to keep on top of things when you’re physically and emotionally exhausted all the time. My mind is going crazy too. I’m a thinker to begin with, but I’m feeling things too much and I guess there’s a bit of anxiety mixed in there too. So I am crying over everything these last couple of days. I feel like a mess.

        Liked by 1 person

      4. Oh dear friend. Big hugs! I’m so sorry you are struggling so much. I’m praying and giving you a great big hug. I’m always a mess. We can be big hot messes together. πŸ’–πŸ’šπŸ™πŸ™πŸ™

        Liked by 1 person

  3. Vivian, you did such a beautiful job writing this……….the underlying truth for the vast majority of us who struggle with a chronic illness. People don’t get it and even more frustrating, many people won’t take the time to understand, even family. The lack of understanding by those who are “suppose” to love us adds insult to injury. God bless you Vivian!

    Liked by 2 people

    1. My dearest Wendi, I’m hurting with you because it’s just so hard@insult upon injury……YES! My PCP is upset for the mistreatment of ppl because she knows what I’ve been through. I had to close my FB account and start over with just my closest friends. And not look back! πŸ’–

      Liked by 1 person

      1. I am so very sorry Vivian…….I can not understand how people can be so very cruel. It is mind boggling. If you don’t agree, or get it, or care, just move on……….even my parents refuse to believe me or care. I sincerely pray that you have family that understands and supports you.

        Liked by 2 people

      2. That breaks my heart that you’ve gotten this response from your parents. My parents have come to understand but not my hubby’s mom. She’s made at me or something and treats the kids bad telling them to get a life……I told my hubby I will not go back to her house!

        Liked by 2 people

      3. Good for you Vivian for standing up for yourself, I know how hard that can be under these type of circumstances. It just doesn’t make any sense to treat people poorly for things they cannot control.

        Liked by 2 people

  4. My daughter who is chronically ill with EDS, Lupus and so much more gets that phase a lot, you don’t look sick and it drives me nuts, if they only knew the difficult times she has even with walking perhaps they will understand. Her faith is so strong and she has touch so many lives, she finished her BA last summer with a GPA of 3.8 she was doing her Master degree program however she is taking a much needed break since she was in the hospital again. Keep up with your posting whenever you can,

    Liked by 3 people

    1. Oh I’m so sorry for your daughter.πŸ˜” my grandmother had Lupus and I often think of her and her struggles. Praise God for her strong faith! I’m thankful she knows and trusts Jesus. I don’t know where I’d be without Him. He is my everything through all this crazy health stuff.

      I will pray for your daughter! She is in my thoughts and prayers dear one. God bless you and thank you for sharing. Big hugs!πŸ€—πŸ’–πŸ™πŸ™πŸ™

      Liked by 1 person

      1. Thanks Dawn, however she was back in the hospital in June for ten days, and she is very weak, she decided to take a break at least this coming semester from her Master program. However she is a leader for Proverbs 31 a on line Bible Study for women through facebook, with Lysa Terhurst who is an author. So as we can see as long as we have a willing heart, God can and will use us

        Liked by 2 people

      2. That’s amazing! I admire her perseverance through her illness. I like Lysa and have read a couple of her books. The one I liked the most is called, β€œWhen Women Say Yes to God”. So true, when we’re willing, God will use us. ❀️

        Liked by 2 people

  5. Thanks for sharing this Vivian. It’s good for everyone to have a better understanding of what you and others with chronic illness must endure. It’s amazing that you persevere through your trials and are such a wonderful mother through it all! ❀️❀️❀️

    Liked by 2 people

    1. You’re very welcome dear Dawn. πŸ€— I know only God has given me the grace to endure this and I praise Him for His faithfulness and mercy. I have struggled a lot with my emotions but I do think my kids have struggled just as much too. At least my two oldest. They have grown in compassion though and I’m blessed by that since that’s not a typical attribute of teenagers.

      Liked by 1 person

      1. That is a blessing for your kids to have compassion, because many young people do not. I’m thankful that God is carrying all of you through these difficulties. I pray He will continue to strengthen you and your family emotionally and provide all you need. You’re an inspiration to me and so many others. ❀️

        Philippians 4:19 NIV, β€œAnd my God will meet all your needs according to the riches of his glory in Christ Jesus.”

        Liked by 1 person

  6. I’m speechless, my heart cries out at the thought of someone having to live like this. It describes my chronic pain – my day to day so perfectly.

    My tears have dried up.

    I visited my Nero Monday to review an MRI, and he saw I have Tethered spinal cord. He doesn’t think surgery is needed. But it’s possible it’s giving some symptoms. There is so much nerve damage that I may not fully regain sensation to my legs. So I will continue to have them numb – thank God I can still walk. My pain medications have been increased to see if it helps and I will return in 6 months. His final words are always, β€˜hang in there.’

    As they say, God take the wheel. Do you sometimes feel like you’re going with the motion of life? Feel like you’d be doing so much more if it were not that we are constantly forced to rest, to sit, to lay. Oh! The frustrations of a chronic illness are very real. But I am so grateful to have people like you Viv that have no judgment and understand. Thank you dear friend. πŸ™πŸ½

    Liked by 2 people

    1. Oh precious Ana…..I can’t cry either much these days. It’s like I’m numb. I used to cry a lot so maybe I’m just all done?

      Dear One, I’m thankful you updated me on your Neuro appointment. I’m sorry about the nerve damage my friend. I had numbness from the waist down for months due to lack of continuity in my spinal cord. I am so sorry for the tethered cord.πŸ˜’πŸ™ I’m so glad you can walk though but will pray so much for this specifically. Also, I’ll pray for the pain meds to help you feel better in that way. πŸ™

      It’s so true Ana, the being forced to pace myself makes it so hard. I’ve never been good at that. Resting, sitting and not exercising because it’s too much is so frustrating! This frustration is real, Yes!

      Oh my friend…..my hubby just lost his job.πŸ™πŸ™πŸ˜’ Pray for us!

      Liked by 1 person

      1. Rest in Him, ask Him for strength during this time, He’ll get you through it. This school year five of my children go to school, and I have yet to buy their school supplies. But I know the Lord will provide – He always does.
        Viv, have you tried applying for SSI benefits for your disability? Also, if you have children under the age of 18, they can also give you benefits for them.

        Liked by 1 person

      2. He will provide! He always does and has…..I feel like going through this job loss again (we lost our job in 2012) is God’s way of showing me how strong I am. My nervous system could not have handled this a year ago.
        No, not yet. But we were just talking about it. All my kids are under 15.

        Liked by 1 person

  7. Great post Viv!! The fact that we truly have no idea how people are feeling reiterates the idea that we need to be communicating with others and having conversations and simply asking how they’re doing, or how they’re feeling…Showing care and concern in that way is so important…Unfortunately the β€˜how are you?’ question and the response of β€˜good’ or β€˜I’m fine’ has become more of a greeting rather than a real deep, genuine, heartfelt conversation…This post reminds me how I need to be considerate and caring of others in my conversations, really taking time to visit with one another πŸ™‚

    Liked by 1 person

    1. I’m so glad you liked it Alyssa! It’s so important to love on the broken……even if we don’t fully understand what’s really going on, it’s good to at least try to show concern. Blessings!πŸ€—πŸ’–πŸŒ»

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    1. I hope so too! It seems when I do attend church all dressed and polished the people question as to why I don’t attend regularly based on how I look. It’s hard to be judged especially by other Christians. I’m not as upset about it though. Like I said in my post, I wrote it a long time ago.

      You’re very welcome dear Friend and hugs to you!!πŸ€—πŸ˜πŸ˜š

      Liked by 1 person

      1. I guess some people only look with their eyes, while others look with their heart, Viv. It’s a little like faith. We can’t see it, but we believe it exists. Those who truly love us, believe what we say. Thank God for those kinds of people, and pray for the rest. πŸ™‚

        Liked by 1 person

      2. Oh wow, how True! I have learned (the hard way) not many people truly love or believe me. And it’s okay. Exactly dear Renee, we pray for them. I’m so blessed by this comment dearest! It’s what I needed to read right now. Maybe, I wasn’t as “over it” as I thought.

        XoxoπŸ€—πŸ˜πŸ˜š

        Like

  8. Vivian, thank you for sharing. Your words remind us to be patient and respectful of others with hidden or visible ailments. Some of the hidden ones may be physical, mental, or emotional. May many continue to surround you as well as others with prayer and support.

    Liked by 1 person

    1. I’m so glad you enjoyed this post Richard. This blogging community has surrounded me with so much love. I’m overwhelmed in a good way of everyone’s support here on WordPress. It’s amazing! Bless you brother! πŸ˜ƒπŸŒ»

      Liked by 1 person

  9. All the feels with this post!
    Struggling with the fatigue after a brain injury is so difficult and people just don’t understand! I’ve found it even worse since I’ve started training for a marathon because people don’t realise that hidden disabilities such as ours are not the same every day. I find that some days I can feel almost the same as I was pre-injury but other days I’m so fatigued that I can barely manage to leave the house!

    Liked by 1 person

    1. Hi there! Thank you for your comment and for relating to me in this. Oh, I’m sorry about your TBI but glad you are setting goals and challenging yourself to run in a marathon. Amazing girl! God bless you and I know you’ll do great! β€πŸ€—

      Liked by 1 person

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