Finding the Balance with Chronic Disease

It can get discouraging -- the spectrum of pain and ability (or dis-ability) my health can span in a single day. Yesterday, despite raging back pain, I was able to dress nicely and go to church, chat with friends and draw encouragement from church members who took the time to thank me for my writing and even a family friend / deacon who always notices when I make it to church, and as he is aware of the challenges of my disease, will say to me affirmingly, "Nice to see you vertical!"

It is truly amazing sometimes, the amount of pain I can be in and still appear "normal." Ankylosing Spondylitis, especially if the patient does not use a walker, cane, or wheelchair to get around, and is not yet fused into a curved, stooped position, is truly an invisible illness. I look normal, but inside inflammation rages through my spine and joints and I experience the pain others can't see.

One normal day for others is like a marathon for me. I am so tired and being out and about tires me with systematic efficiency -- draining me of energy and pumping up my pain levels. Something as routine and simple for most people as grocery shopping, can leave me too exhausted to speak, feverish, and in severe pain.

It's really frustrating that people can't understand. It's awful to think that people around me may think I am making this up, faking it, or that my pain is really just some mild aching.

Pre-diagnosis, I enjoyed an outdoor walking routine. Never one to enjoy exercise or athletics, I discovered walking offered many positive benefits: increased energy, decreased stress and anxiety, improved posture. I loved my "artful walks" -- enjoying the skyline, backdrop of pastel sunsets to black tree silhouettes, music in my ears thanks to my MP3 player, fresh air, and the scent of laundry detergent from neighbors doing their laundry. Sometimes I paused to capture one of these images with a camera, or to jot down a snippet of a sentence in a notebook. Inspiration was all around.

I became unable to continue my walks about a year ago -- three months before I was diagnosed. The walks caused a spike in the pain and limping, and elevated my low-grade fevers.

This week I determined to try again. According to Arthritis Today magazine, walking is an excellent form of exercise for arthritis. Walking lubricates the joints, releases pain-fighting chemicals... It sounded great to me.

The first day I walked 1.5 miles, divided into two walks.

It was wonderful! I was back to my old routine. The beautiful afternoon or pre-sunset skies, the fresh air, the drifting laundry scent hovering in my neighborhood right along with a very real sense of hope. I was strong, I would prevail, and I would show Ankylosing Spondylitis who was in control!

The next day I went out again for another 0.75 miles. Not that far. The walk increased my spinal pain, and by the end I had knee and hip soreness. Oh well, I mused, I was strong and I would walk through it and soon I would be better.

By the end of the next day I could barely gimp through my tiny house, my hip on fire with inflammation, the ligaments and muscles that support the joint feeling pulled and bruised.

My spirits and hope sank.

What if I wouldn't be able to reclaim my walks? What if walking for exercise aggravated my hip joints to the point that it claimed the ability to walk even the small bits I need to maintain my life? I just don't know what the future holds for me with this disease. I don't know if I may be one who needs to have hip replacement surgery, or ends up in a wheelchair.

I'm 32 years old. I'm not prepared to choose a cane or use a wheelchair for trips to the zoo or the mall.

It's a very isolating sense of worry; a very isolating pain. I thank everyone in my life who takes me at my word when I say I am exhausted or in severe pain, even when I "look normal" and am smiling.

So while I take a day or two off from my walking and turn to research to try to find the answers to my questions, I cast out the proverbial net and pull in my thrashing, fighting hope, and know that tomorrow may be better than today.

I will keep fighting to find the balance.


  1. Oh...prayers for you, sweet Jennifer. I'm thanking god for your example in my life, for your perserverance, and for teaching me so much about living right. One day your body will be restored to the fullness of what it was...I pray that in the mean time you will feel the grace and strength of our Lord on this difficult journey. you are beautiful!Thank you for sharing this with us. Love to you!

  2. Jennifer,
    I know you will find your way no matter what that way might be. You have such strength - your girls have such joy. Think smaller, walk to the end of the driveway or just down the block. I have a friend on twitter who says - motion is lotion - it lubricates those joints! And if you can't manage it - you are enough just as you are. I pray for your pain to subside - I am so sorry it is so difficult for you right now. Thinking of you :) xox Jenna

  3. Dearest Jenn,

    I'm sorry you have pain and stiffness and a constellation of symptoms, and I'm even more sorry that those symptoms would come on with such vengance when you're trying to do something so positive for your body and spirit as walking. As the affirming deacon says, being verticle is good, and being able to move at all is good, but I wish so much more than that for you!

    Thank you for being honest, because you do clean up very well, and even for people who know and love you it's not possible to tell much of what you're experiencing when you're dressed so nicely and look so pretty. I always think about that when I see you, to never assume, because you could make it easy to forget all about it.

    I will never stop praying for you! I love you, Wendy

  4. Dear Jennifer ,
    I can so relate to your pain , and the fact that we look OK or normal at 1st glance.
    I've been on a 4 month flareup that has me only able to walk 50 yards before having to bend over and put my hands on my knees for relief.
    Keep your positive attitude and Take it One day at a time , Remember , Tough times don't Last , Tough people do.
    Kindest Regards , Gary

  5. My husband has been disabled since in his 30s. He is now 59. We have lived life so differently from friends and family. I identify with the frustration you feel and that you "look normal." My husband feels those same frustations. Bless your heart. May God give you much grace for the cross you bear.

  6. Quote .... Even when I "look normal" I am smiling.

    Jennifer, that's the secret to fighting this disease!! The pain strikes long and hard but we carry it with out heads held high and a smile on our faces.
    The secret is... Keep the pain physical, NOT mental, keep smiling Jennifer and your winning..

    Best wishes ... Tim, Nottingham City. UK.

  7. My husband has AS and he gets his exercise by mountain biking or on his recumbent (with a backrest) indoor bike. He can't take walks at all anymore.

    Thanks for posting.
    Best wishes.....Lisa, San Diego, CA

  8. I am so sorry to hear about how you suffer with this, For me, my biggest health issue at present is Multiple Sclerosis, though I have AS and others, as you know they affect all of us differently. Hope this is e ncouraging to you, I'm in my 40's, not much older and made to use a cane. It is so hard to have to use a cane when we are younger. Though it helps me so much with balance, pain and other ways, it's been one of the biggest tests for me, it's easy to say we have our secuity in Christ until we're given a really hard test and learning to put that into action is a process, a daily journey for me. Many of my problems are invisible and often people don't understand and can't see our worst suffering. I've had to learn that having a chronic illness that robs us of so much is no different than the loss of a loved one and it takes grieving in the same way, yet in the sense, at least for me, support wise it's harder.
    God's done amazing things in my relationship with Him through health challenges and thats not a simplistic statement. I'm so desparate for Him and seek Him harder than ever and He has become so real to me, He has shown me what really matters in life and what does.
    It remains a challenge, a daily one. I've prayed God show me His purpose and He's blessed me with the honor of serving Him, I am not worthy of being His servant.
    I admire your courage and honesty by sharing your struggles Many Christians think we are supposed to be strong, God calls the weak so He is the strong one shining through us., so that His work can be seen. If I could be strong myself, why would I need to desparately lean on Him? Everyprophet, teacher, disciple etc. He called, they were weak and often a mess. Paul, Jeremiah, Isaiah, Moses, David, to name a few. God is aGod of purpose, when we are at our weakest, God is most powerfully at work in us, II Cor. 12:8-9.
    Praying your illness will get undercontrol,you go into remission or they find the right drug, perhaps methotrexate or Enbrel? God Bless
    P.S. have seen your writing on restministries and when saw you had AS, wanted to connect with you and didn't see a way to.

  9. Thank you for your comment, Bess! If you would like to email me, my address is under the About Me tab.

    I do have a cane now but don't use it often.

    I appreciate your thoughts & well wishes.


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