Glimpse Into Chronic Illness: Life on the Sidelines

Chronic Illness and invisible disabilities create a battleground for unseen heroes and unorthodox victors. Age, wealth, and social status mean very little when it comes to facing these conditions because disease has a way of leveling the playing field.  In my Lyme disease and CIRS (Chronic Inflammatory Response Syndrome) social network, I have encountered a variety of individuals from different walks of life. Some are young and beautiful individuals who outwardly appear to have everything going for them, yet they are inwardly hurting, grieving, and feeling they have to face these challenges alone. Individuals with chronic conditions often have emotional trauma in coping with both physical and social losses--especially when they are forced to withdrawal from society as a result of enduring intense pain, weakness, neurological symptoms, and various sensitivities to light, noise, chemicals, and food.

No matter how you try to sugarcoat it, experiencing life on the sidelines is just plain hard.   It is a daunting and grievous process for anyone who has been through it, especially young moms and dads who were forced to give up their career, a spouse, or a close family member/friend over the ordeal. As you experience social withdrawal, grief can sneak up on you in unexpected ways.  You go on Facebook and other forms of social media because that is the only way to stay connected to other people.  Some days you find yourself sad or envious when you observe pictures of your friends, family, and acquaintances living a "normal" life.  You see smiling faces of people going on vacation, enjoying family events, and celebrating holidays, while you find getting out of bed to be an ordeal.  Then, you feel guilty for your negative emotions and berate yourself for not accepting your isolation and being happy for other people who have never experienced living on the sidelines or missed out on "normal" activities.

The grief that a person experiences with social withdrawal can infiltrate every aspect of your relationships, whether it is with your own family or distant relatives, friends, and members of your church.  You see the look of disappointment on your child's face when you miss yet another concert, play, or sporting event, and you feel terrible for letting them down.  You sigh as your entire family leaves for church, a birthday party, or a wedding and you can't make it.  You plan a trip to see your extended family and have to cancel yet again because you are having another flare up.  You find out family members are in town for a reunion or party but don't think to stop by afterwards since you are too sick to leave the house.  You finally are able to get out for a family dinner or community event but have to brace yourself for what to say when you are unable to partake in the meal and have to bring foods that you know are safe to eat.  You worry about what people might say to you, that they might judge or question you.  Maybe they will perceive you are on the next "fad" diet or misunderstand your reasoning for the food choices you are forced to make because you are either allergic or unable to tolerate anything else.  You have to prepare yourself for any potential embarrassment if you might react to someone's perfume, air freshener, cigarette smoke, or cleaning chemicals they might  be using at the event.  You wonder how you should discreetly handle the situation, especially when you are in someone else's home and you don't want to upset them or feel like you are a burden.  Family, friends, and church members may become awkward and uncomfortable around you because they just don't know what to say.  If you are in a wheelchair or need devices for mobility, you may encounter stares or uncomfortable glances from people who are startled to see a young mom with physical impairments.  You may be out in public and observe someone purposely moving to the other entrance to avoid you.  You may avoid certain situations to protect yourself from rejection and then feel guilty for your feelings.

These are all very real experiences that I or someone I know who has a chronic condition/invisible disability have gone through at some point.  When we grieve these losses, we can easily be pulled into a downward spiral of bitterness and depression, and the "pull yourself up by the bootstrap" mentality becomes a false perception that will eventually let us down.  What do we do with our grief, and how do we handle our fears, worries, and disappointments?  Christ's redeeming power is the only true antidote that can lift us out of such despair.  Christ knows more than anyone else what it is like to be isolated from society when He endured the most horrific death imaginable while experiencing complete separation from His Father.  He was tortured and humiliated so that He could share in our loneliness, grief, and sadness.  Christ wants us to trust Him to carry our burdens so that we can we truly heal.  Healing begins in layers of forgiveness and letting go of our fears/worries of what others think.   Living on the sidelines is is a gut-wrenching experience that allows the Lord to change our hearts as we renew our perspective to appreciate what we have.  It forces us to take NOTHING for granted.

In 2015, I experienced unimaginable suffering and grief while going through a major relapse that forced to be bedridden for a time.  It felt like I was starting over and I completely lost any ground gained from five years of fighting chronic Lyme disease.  I wanted my life back again!  In my recovery process, I asked my friends and family to pray that I would be completely back to "normal" by May of 2018 so that I could attend my daughter's high school graduation without any problems.  In those 2 1/2 years, I prayed for God to help me as I painstakingly rehabilitated my body through series of exercises, alternative therapies, and diet modifications.  I didn't give up and eventually had real results when I started taking a few risks in getting back to "normal" activities.    For the first time in several years, I could make it through concerts and other school events without feeling like I was going to pass out the entire time.  My teenage daughter took me shopping for the first time in over six years, and we celebrated the accomplishment with a selfie!  I was able to attend church, movies, and family events.   I even took a walk around the neighborhood while pushing my wheelchair for support. I shared some of these experiences on social media and received much encouragement and positive feedback from others.  I felt like I could accomplish anything with God's help and the encouragement and support of my friends and family!

Although my prayer request wasn't answered in the way I hoped, I did make it to my daughter's graduation and was able to relax and enjoy myself.  On that momentous occasion, my heart was full of happiness and gratitude the entire time!  A couple of weeks later, we planned a graduation party which became a reunion with friends and family.  It was a very joyful event for all of us.  I made it to both the graduation and her party without a problem, and my daughter and I had an incredible summer making up for lost time together before she was ready to head off to college.  We spent as much time as possible together working on projects at the house, going on rides in our family vehicle, and taking shopping trips.  We even took a 500 mile trip together to see some of our relatives and visited places from my childhood. This summer we transformed how we viewed our situation.  Instead feeling sorry for ourselves and fretting over my continued impairments, we used that time to enjoy every moment that was redeemed for God's glory.  I felt truly blessed to be able to attend church and some family events, and I found myself experiencing confidence in ways I have never had before.

 I am a believer that the Lord doesn't waste our suffering because it has a purpose, and I try to use my own losses to empathize and encourage others who are grieving.  Despite all of the grief and trauma that sideline living has brought me, I can honestly say that I have a tremendous amount of happiness in experiencing these precious moments with my family.  I truly hope that my story will inspire others to defy the odds and take risks.  Happiness may seem impossible at the moment, and we may not see the light in our circumstances, but there is always hope around the bend.  I can testify that God can redeem our despairing experiences for a greater purpose.  We may need to modify our goals and dreams to fit God's plan for us, but He will work it out in His own way and timing.   Never give up no matter what!

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JOYFUL TREASURES:  Plan a Date Night!

1 Corinthians 13:4-8, "Love Never Fails."

As I began to come out of living in the sidelines marred by chronic illness, I gained more appreciation for activities I once took for granted.  I especially treasure taking date nights out with my husband who has  been committed to stay by my side and navigate our relationship through insurmountable challenges.  It seems like our bond of love defies the odds and grows stronger each year.  We typically dine out once a year for our anniversary, and our favorite dates are movie nights together. Our date nights are a simple reminder of our early years as a couple, and it feels so good get out and enjoy time alone together!

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For more information about Chronic Conditions and Invisible Disabilities, you can read some of my other blog posts:

https://puresimplewholeliving.blogspot.com/2018/05/glimpses-into-chronic-illness-letter-to.html

https://puresimplewholeliving.blogspot.com/2018/05/glimpses-into-chronic-illness-my-trip.html

https://puresimplewholeliving.blogspot.com/2018/02/simply-living-when-life-is-anything-but.html

https://puresimplewholeliving.blogspot.com/2018/03/glimpses-into-chronic-illness-why-cant.html

https://puresimplewholeliving.blogspot.com/2018/04/glimpses-into-chronic-illness-but-you.html

https://dzehm.blogspot.com/2017/01/out-of-labyrinth-part-1-healing-through.html

https://dzehm.blogspot.com/2017/01/out-of-labyrinth-part-2-lessons-ive.html

https://dzehm.blogspot.com/2015/10/care-in-our-culture-part-1-invisible.html

https://dzehm.blogspot.com/2016/02/care-in-our-culture-part-two-invisible.html

http://dzehm.blogspot.com/2014/08/kellys-hope-part-three-bridging-gap.html