This was written just weeks before Sarah had outward health manifestations in the form of tics, seizures, and mobility issues. Prior, she “looked fine” but felt so far from it. – Michael
I distinctly remember watching a video my husband taped of me approximately ten months ago. My mannerisms seemed poised, my speech resonated in an even pleasant tone, my thoughts appeared collected. But how could this be? I thought to myself, how in the world do I look like this when I feel like junk? Why is it not registering on film how difficult it is to formulate my thoughts and project them with a verbal command? That’s when I realized why people couldn’t understand me. I wouldn’t be able to comprehend me either. There has always been that strange dichotomy between how I look and what I feel.
My husband has lamented over this contrast in reality and perception. He’s seen my seemingly normal body drop to the ground to a thudding collapse. He’s seen the contorted look on my face when pain zings through my body. He’s seen how tiring it is for me to simply make a meal on some days, and how I accidentally slice into my flesh when my motor skills fail me. He’s seen the days where my body felt a decrepit one hundred years old, too stiff to move, too sore to propel my body into an active position. Those were the days he had to carry me to the dining room to eat.
Upper Left: Being months from a bedridden state from an almost deadly toxic mold exposure. Middle left: Sick at college. But who could tell from the pic? Bottom Left: Thanksgiving ’13- the very day I first began my episodes of “wobbly walking,” wheezing, then collapsing. My family encouraged me not to go out that day, but I insisted otherwise, and placed on the “make-up face.” Top Right: Home from college due to illness. Bottom Right: Heavily medicated due to pain.
He’s seen the apologetic look on my face as I’m forced to leave church service because of the frightening array of toxins that causes my airway passage to close. He’s seen me press on, fighting to do tasks of normalcy like washing the dishes when energy reserves were tanked. He’s seen the impending results of expending energy, finding me on the couch with whimpers of pain.
He’s seen the moments where I’ve struggled to read (my favorite pastime) as I finally placed the book down from a dizzying vertigo reaction. He’s seen the times where I’ve tried to pen a sentence, but the words couldn’t come. They were silenced by a malfunction in my brain. He’s seen the moments where I have pleaded with him to pray, still knowing God’s strength was perfected in my weakness.
He hears the lines that most will say, “I don’t understand what the problem is; she looks fine.”
He responds with a terse reply of, “You don’t understand. She takes pain pills and wears a mask with you.
She doesn’t fake her pain with me. When she’s really faking is with you. After she’s done exerting energy she doesn’t have with people, she collapses on the couch, paying for the price of expending energy she doesn’t have.”
I don’t write any word of this post for sympathy, dear heart. I’m naturally more private, reserving these thoughts to a journal stowed away on a dusty bookshelf. I’m sharing these words for several reasons:
- 1) To provide solace to those facing health issues that others don’t understand because of the strange dichotomy between how you look and what you feel.
- 2) To provide comfort for caregivers who feel alone in their thoughts.
- 3) Lastly, this is for those who are perplexed by people who seem fine but say they aren’t. This is in no way a judgment towards you, my dear heart.
Just as I was confused by my own appearance on video, I understand how it seems odd to see an individual who, by appearances, could only depict a picture of health.
I hope you have a small snapshot into life inside a home and outside a home with a person who struggles with chronic health issues and the strange dichotomy that may exist between how they look and what they feel.
This article was featured in:
Related Post: Six Things NOT to Say to Someone Who Battles Chronic Illness
Loved the Blog Sarah! Great read! We are praying for you and believing for your full and complete healing 🙂
-The Tussings
Sarah very interesting to read. When you used to visit I had a feeling something was wrong, I could feel you did not feel good. I even said that to Dale. We are so happy you have Michael who is your rock. You will be a great writer one day and help other people understand what it is to have Lyme disease. Prayers for healing.
I think it is awesome you are sharing Sarah’s writings, I look forward to reading more!
Sarah- Thanks for this post. It was very comforting. I, too, am plagued with looking and acting like my normal self in front of others and suffering with my illness alone with my husband. I guess we all have a little people-pleaser in us and want to appear okay when we can. 🙂 I pray for your recovery all the time. Blessings to you and your family.
I wish I could say I didn’t know what you were saying in this blog post but I know all to well. Having suffered from a chronic illness since I was 19, I know it all too well. It brings to mind the old saying…”never judge a book by its cover!” My Rheumatologist once said to me, “I wish that for one day I could have the family and friends of my lupus patients walk in the bodies, just for one day. This way they could understand what all of you feel on a daily basis!” The other bit of advice he always gave his patients was to take the time to stop and smell the flowers. Who said you have to vacuum your house on Monday…tuesday is another day and so on and so on. He used to tell us to take one day at a time. We will have good days and bad days and to learn to stop and do what is comfortable for us. Laughter is one of the greatest therapies there are. Sometimes I will just relax and watch a funny movie and laugh all the way through it. Its a hard road to tow Sarah, but so worth towing. Your message is one that so many people need to hear, and learn to accept those of us that live with chronic pain. Your day will come sweetie, and hopefully we are all promoting more awareness to Lyme Disease. I pray that one day your good days will far outnumber your bad ones. Keep the faith honey. We are all by your side trying out very best to do all that we can do. <3
I am so sorry for what you are going through (and for your family). I can relate somewhat with what you are saying. I have Fibromyalgia. I also get the questionable stares, thoughts, questions, etc. about how I look fine, but in the mean time, I’m hurting so bad I could just crawl in a hole somewhere and not come out. Unfortunately, my husband was not understanding, at least not in his attitude to me. I am praying for you and your family!!! God is good and we must ‘keep the faith’ that He will heal you! I hate that you are having to go through what you are, but your story and your family are reaching a lot of people that may never hear about God and how good He is and the miracles that He can perform. God bless you, your family and friends as they are doing everything that they can to help you in every way possible.
So thankful that you’ve got your blog up and running! Praying for you dear sister in the Lord that His strength will be perfected in your weaknesses. All of us need Him more than we realize. I am learning this more and more. May we all fully rely on His strength in all our moments and experience His peace. In Him, Chanda
I love reading your blog, everytime I saw you you were always so graceful and sweet, even though you were suffering inside. you’re such an inspiration
Sadly, I know just what you are going through. I realized about a month ago that I have a silent disability- even though I look perfectly normal. A combination of psoriatic arthritis, fibromyalgia, and a vague diagnosis of Chronic Lyme make evey day a struggle, because of fatigue, joint pain, migraines, vertigo, and depression. But I have two young children, so everyday I do my best to be present for them.
Sarah, you are so not alone. There are so many others who face that dichotomy and deal in various ways. Many keep trying, keep going places, trying to think straight, not fall over, then get home and sleep the rest of the day. I’ve stopped going to church – too many people, too much chaos, too many ‘I’m fine”, hard to stand much less sing, too loud, too much everything. A dear friend told me I don’t have to do things that so many others do. Anyway. Keep blogging and I’ll keep up with you. God bless you and Michael. I pray for you both every day. With all my love, Jeannie
To Sarah, my daughter, my Angel. You continue to amaze me with your Godly life and your desire to serve Him even through your struggles. It is wonderful that you can write what is on your heart and know that in doing so you are helping others through your words. I know that through your latest health crisis you have heard from many others who have had this same issue. You’re an amazing writer and I cannot wait until you are well and are able to continue this path that God has set before you. I love you always, your Daddy.
Such an engaging and elegantly worded post. Kati and I are so excited about what God is doing in and through you now and what he plans to do. Glory awaits those who seek His face and His eyes are fixed on you and your family. His smile is ever toward you. Your faith is stirring more in all who have heard and read. I am encouraged. I hope to meet you and Michael one day.
I understand. I have MS and most of my symptoms others cannot see or understand.
Sarah, you are and always have been an amazing communicator and eloquent writer. I pray this blog helps people understand the difference between looking healthy and being in constant pain. Many people judge other people who are very much sick just because they don’t look sick. And of course, with how gorgeous you are, few people understand how strong you must be all the time to smile through the pain. Well written, Sarah, and I will continue to stand by you through this terrible time and help people understand what’s really going on. Love you forever,
Crystal
I am so sorry, Sarah! All this time, I knew you struggled with your health, but I had no idea just how bad it was till January or February! I know what it’s like to struggle with chronic pain, while seeming “normal” to the world, but what I deal with is nothing like the symptoms you have experienced and continue to experience! You are a very brave woman and both you and Michael have been blessed with the gift of each other.
This is one of the most beautiful Christian blogs I have read. Beautiful in appearance, and more importantly, beautiful in content. You have spoken to me, you are being used by God!
I’m a Christian writing coach/editor, at NextStepCoachingServices.com. I’m planning some writing series for next year. One of them is deciding what to write about. I truly believe in using our messes for our messages! (I’m the author of two very real marriage books, What a Husband Needs from His Wife and What a Wife Needs from Her Husband, Harvest House. Would you consider being a guest blogger for us next year? We could even rework something you’ve already blogged about concerning writing out of our struggles. Thanks for thinking about that.
Another reason you ministered to me – I have fibromyalgia, supposedly. I don’t know what it is, to be honest, but it derails me often.
Hi Melanie, thanks for taking the time to read my blog. I am humbled by your kind words and I’m thankful this blog has been a source of encouragement for you. Firstly, I am so sorry to hear about your own chronic illness. It took me roughly fifteen years to really discover some of the sources of my ongoing illness after receiving a number of vague diagnoses over the years. I’ll personally be praying that you find your own closure of what’s transpiring in your body from the Great Physician and healing for your achy body.
I love your mention of “writing out of our struggles” and “using messes for our messages” and I would love to join you in that process as a guest blogger. I’ll send you an email here shortly to the email address you provided with your comment so we can correspond more in-depth about the details. I look forward to hearing more about how we can work together in this endeavor for the Kingdom.
I’ve had this exact experience! Seeing myself in photos and hearing myself speak in videos, I can remember how much of an effort it was just to stay upright and string sensible sentences together… but just by looking at me and listening to my voice you’d never know the internal straining or the “payback” crash that followed! You’ve described this strange dichotomy with such helpful, clear, gracious words. Thank you!
Thank you for your kind words, Kristy! Yes, having that outsiders perspective of looking at yourself on video is certainly insightful. I guess we can kind of understand when others don’t comprehend that of those facing chronic illness, a whopping 96% are facing one or more invisible illness(es). Thanks for dropping by with your thoughts!
my gosh (please don’t judge me for saying omygosh) its better than other words I can think of.
I somehow stumbled across this website, inspired, because this morning I have been overwhelmed by grief and the chronic conditions I manage! I went to watch something about Joni Eareakson Tada, to try come out of my emotional struggle, and this came up.
I read this and it brought tears to my eyes because I have not read anything like this of a abled body looking women , like my self but suffering quietly! guys I feel so alone and scared, to read this (I’m still weaping) is both confronting and liberating
Thank you for sharing this (as i sit here in pain) ready to over eat because its just so hard to bare!
Thank you
don’t know if you will get this but feel free to email me I would love the contact