Thursday, April 19, 2018

Glimpses Into Chronic Illness: But You Don't Look Sick!



A while back, I was browsing some photos on Facebook in which someone took random photos of people at Walmart in unusual situations to poke fun at them.  On the post, I saw a photo of a woman at a fast food restaurant sitting in a chair while waiting in line to make her order.  Underneath the photo, people were making very rude and judgmental remarks about her weight and about how lazy she must be.  I was very disheartened by these remarks because I guessed that there was more going on there than meets the eye and because, if I was in her situation, I would have had to do the same thing.

When I discovered a tick bite on my leg while visiting family in Northern Wisconsin Labor Day weekend 2009, I didn't think much of it and never would have dreamed that it would change my life so dramatically.  I was pregnant at the time so when I started having symptoms, I assumed they were pregnancy related.  About a month later, I was at a work training where we had to stand in line and do these silly demonstrations.  I remember having a strange sensation in my legs like the floor was swaying and I felt like my legs couldn't hold me up.  I wondered if I going crazy and thought to myself that this was the most bizarre pregnancy I have ever had.  From then on, I was never the same, and I've had problems with mobility and balance in my legs ever since.  I had no idea why I was having so much trouble walking.  I thought I must be losing my mind, and I was afraid that others might find out.  I became an expert at hiding my vertigo and balance trouble.  When I was at work, I would nonchalantly hold onto the wall, a chair, or whatever I could find to steady myself.  I pasted on a smile and faked my way through it.  Faking and ignoring my body worked for a while; however, once my symptoms became worse it was becoming increasingly difficult to hide, especially when I started having falls.   I had to make a tough decision for the safety of myself and the seniors I was serving at the care facility.   I knew I had to step down from my position and take a leave of absence.  It was one of the hardest things I ever had to do.  I was humiliated with this moment of defeat and felt like a failure.   At that time, I attempted to hide my impairments in public by using my son's baby stroller for support and balance.  Eventually, I was diagnosed with Chronic Lyme disease, a common invisible illness.  Unfortunately, treating the disease with antibiotics caused an adverse reaction that actually made my symptoms worse instead of better.  Once my son was becoming too big for a stroller and I was too weak to push it, I switched to a cane and later on had to get a wheelchair to use for long distances and mobility in public places.  The blessing of using these devices, especially the wheelchair, was that they gave me freedom to be able to face my dependence and be more open about my illness with others.


People with invisible illnesses and disabilities often call the impairment their "secret identity" or their "double life."  They will describe their ongoing battle with how others perceive their condition.  As they isolate themselves to avoid these scenarios, their social lives will falter and fade into the cracks. In my support network with individuals who have chronic conditions, the number one complaint I hear is when people tell them they look great or they do not appear sick.  They often will perceive that the person does not believe them or is minimizing their pain. When people tell me how great I look, I take it as a compliment.  I usually smile and say thank you, or I might add "I wish I felt as good as I looked."  

Other individuals in my support network have shared frustrations in how to respond to rude and insensitive comments from individuals who do not seem to believe they have an impairment.  For example, individuals with invisible impairments are often criticized and accused of being lazy or deceptive if they use a handicapped parking spot.  They may ask a spouse or someone else go to the store for them in order to avoid the scorn and anger of uninformed members of the community.
Individuals with chronic conditions will also struggle with how to respond to questions about how they are feeling.  They will often give a dishonest answer because they may question the person's sincerity, they may see their pain and impairment as a sign of weakness, or they may not want to talk about it.   

 Just because someone is struggling with how to communicate about their impairment does not mean you shouldn't ask them questions or show that you care.  It is refreshing for them to see your sincere demonstration of kindness and consideration.  I bring up these issues, not because you should worry about what to say to someone with health impairments, but to offer insight into their lives.  We are more equipped to show respect and compassion to others when we are aware of what is not visible to the eye.  You may have never experienced going through a chronic condition or having an invisible illness/disability.   It might be more challenging to have empathy for others in this situation.  I realize that it can be very hard to understand unless you've been through it yourself or with a loved one, but there are ways you can help.  Small things like making a phone call or sending a card in the mail to show them you care will make a difference.   If you want to uplift someone who is struggling, take the time to pray with them over the phone or in person.  You can also help out by offering to come over for a couple hours and clean/do their laundry, pick something up for them at the store, or take their kids out for an afternoon of fun.  I hope and pray that more people will take time to learn about the pain and struggles of others so that they can have compassion and empathy for them.


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JOYFUL TREASURES:  The Truth will Set You Free!

John 8:32 "and you will know the truth, and the truth will set you free."

There are two kinds of courage in dealing with chronic illness.  There is incomprehensible strength in bravely pushing through the pain and bearing with it; however, I have witnessed a new dimension to courage when that person openly admits their need for help.  God will meet us where we are at to comfort us in our sorrow over our losses.  When we finally are able to get past our grief and embarrassment with our impairments, we get down to the truth and that truth will set us free as we become vessels of God's grace in our weakness.   

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