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My Invisible Disease.


I have an invisible disease, several actually, but the worst of them all is Lupus.

I've been struggling with a flare up of epic proportions (which is also why I have not been posting a lot recently).  This has made me think of several things, knowing that I am not the only one who suffers with an illness that you can't easily see.

If you have one of the many invisible diseases that sadly plague a large percentage of people, or you love someone who suffers from one or more, you will very likely be able to relate to this post.

For those who aren't familiar, here is a list of some 'invisible' diseases, this is by no means a complete list, however it will give you an idea:
  • Anxiety/Panic Disorders
  • Autism
  • Chronic Fatigue Syndrome
  • Chronic Pain
  • Coeliac Disease
  • Crohn's Disease
  • Depression/Psychiatric Disabilities
  • Diabetes
  • Epilepsy
  • Fibromyalgia
  • Food Allergies
  • Heart Disease
  • IBS (Irritable Bowel Syndrome)
  • Lupus
  • Lyme Disease
  • Migraines
  • PTSD (Post Traumatic Stress Disorder)
  • Rheumatoid Arthritis
  • Sleep Disorders
  • Sj√∂gren's Syndrome
  • Ulcerative Colitis

What is an Invisible Disease?

Some may call them a disease, others a disorder, and even others are referred to as a disability or condition, but they all have one thing in common, the person who is afflicted does not easily appear to have anything wrong.  They don't walk with a cane, use a wheelchair, talk with sign language, or use devices to assist them which makes it obvious that something is wrong.  To the average person, they would appear healthy or similar to a person without illness.

Who has these Invisible Diseases?

About 10% of Americans have a medical condition which could be considered an invisible disability.[1]  Nearly one in two American's (133 Million) has a chronic medical condition of one kind or another.[1]  Most of these people are not actually disables, as their medical conditions do not impair normal activities.[1]  96% of people with chronic medical conditions live with a condition that is invisible.  These people do not use a cane or any assistive device and act as if they didn't have a medical condition.[2]  About a quarter of them have some type of activity limitation, ranging from mild to severe; the remaining 75% are not disabled by their chronic conditions.[1] lk
  
What is it like?

I cannot answer this question for anyone but myself, but when I was younger, before having any of the physical problems that afflict me today, I was athletic and very active.  Adjusting to a life that cannot include my favorite activities was very difficult.  And even though I am in my 11th year, I still have times of grieving over the activities that I'd like to do but just can't due to either physical limitations or lack of energy.

I look 'normal' and healthy, so I get strange looks at times from people who I assume just think I'm lazy or dramatic.  During church services, I cannot often stand through the entire worship section.  My knees and my hips rebel as I stand gripping the pew in front of me....singing....and often secretly praying that the pastor will instruct everyone to sit.  But on the occasions where he does not, I am forced at some point to sit down when everyone else is still standing.  I see the looks....they look judgmental to me.  I imagine them thinking, "How disrespectful."  "Does she not see everyone else in the entire church (minus a few elderly people) standing?  What's wrong with her?".

Stairs are not easy for me to climb, not because I'm lazy and out of shape, but because my knees, hips, and sometimes muscles fail to comply with my instructions.  And I've fallen more times than I can count (yes, a few times have been down a flight of stairs).  But when I take an elevator, people don't know what is happening on the inside of my body...they see a woman in her mid-thirties that looks healthy.

I have to make daily decisions that most people take for granted.  Chores have to be split, as doing more than one or two in a day will cause me to pay the following day.  I can't stand at the counter to put my make-up on, for many years now I've put it on while sitting down with a hand held mirror.  Hair styles have to be maintained without a lot of standing time.  Showers need to happen in the evening usually because I don't have the energy to shower and put on make-up or brush/fix my hair without a break in between.

My Doctors and my husband have encouraged me to get a handicapped sticker for my car (and to use the motorized scooters in the stores) because it isn't always easy for me to walk through a store....and yet my pride stops me because I already get enough weird stares, I can only imagine what people will think when they see me getting out of a car in a handicapped spot.

Activities for my son are limited.  He can't play 2 sports at once, and sometimes we can't even play 2 in a row...because the constant driving and traveling to practice and games, wears me out.  I hate that!  Events that happen across town are often out of the questions, unless someone helps with driving.  (I have a wonderful friend who for a long time split driving to golf practice with me!  She'd take the kids, I'd pick them up and take them home....if she hadn't have offered this, my son wouldn't have been able to golf!)

Time with friends is limited.  I can't have energy for my family and my friends...I usually have to choose one activity or the other.  A quick morning coffee break isn't so easy since my body screams in pain for the first 2 hours after waking.  Moving is a challenge early on in the day.  I've often said that I wake up feeling like the Tin Man....with rusty joints and needing some oil. 

I like to be outside, activity and sun are good for most...but I have to find the fine line between enough and too much.  Too much sun will make me sick, even to the point of vomiting with a Lupus flare up.  You will often find me in the shade.  Too much activity can make my joints inflamed and my muscles and connective tissue irritated, which can make it hard for me to walk or move for several days.

I am in a great deal of pain on a regular basis, still trying to go about my day like everyone else.  Attending schooling events, going grocery shopping, worshiping at church, praying with others at Bible Study....smiling, even though I hurt.  You may catch the occasional grimace, but I'm usually pretty good at keeping it inside.  

I feel, as many like me do, that no one understands what it is like to live everyday in pain.  A good day is not a day without pain, I cannot even recall the last day without pain, a good day is a day where my pain is manageable. I have learned to adjust my expectations.

What can I do for someone with an Invisible Diseases?

Try to be understanding the next time you see someone who may look 'fine' or 'normal' who is using the elevator instead of the stairs, who's sitting during worship at church, who is parking in the handicapped spot, who's using a scooter at the grocery store.

If you know someone has one of these conditions, offer prayer and support, give compassion, if you're going somewhere together...walk a little slower, and if you are led....help in practical ways.  Help them grocery shop, mow the lawn, keep in contact because it is a daily battle.   

I've had many surgeries, but one that I had last year was known to my Bible Study group and friends.  For a couple weeks I had a meal delivered every couple days after surgery.  It was wonderful!  People sent cards, called asking how I was doing, and really blessed me as I recovered.  This was the most that had ever been done for me out of all my surgical procedures (which is somewhere around 12-15...I've lost count).  This was so beautiful and helpful, and yet....what about the other procedures?  What about the times I miss church, miss school functions, miss an outing with my girlfriends, or even a family day?  

Sadly my condition will not get better like the flu or go away eventually like the chicken pox.  Without divine healing from God, I will continue to have this for the rest of my life.  Just try to imagine being sick that long.  Just try to imagine how discouraging that would be at times.  Put yourself in someone else's shoes just for a while, then maybe you will know how to help.

Due to Grandparents, I had learned compassion for their needs as they grew older and their bodies were deteriorating, causing them pain.  I never imagined that at 25 I would begin experiencing problems which I thought I would have at least another 30 years before dealing with.

How do you cope?

I pray a lot!  God has been my refuge and strength.  I've cried, been angry, been depressed, told Him it isn't fair, and even thrown a temper tantrum or two while praying (not my finest moment, but real none-the-less).  And just like the old 'Footprints in the Sand' poem says, when I was the weakest, He carried me.

That is how I get through each day, sometimes having to focus on getting through each hour....Jesus.

My friends are a blessing, and so many times I've seen them being the hands and feet of Jesus, bringing encouragement, love, and acceptance.  

Parents, Siblings, my Husband, my Son, and other family give their love, prayers, and support, but none of them meet all my needs.  None of them hear every cry, count every tear....None but Jesus.  He is the One and only that I know will never leave me or forsake me!  

He is how.....I live, He is how I can still find joy, He is how I can find the resources to love others in spite of myself.....He is how!   

If you struggle with or suffer from an invisible condition, I pray that you feel encouraged to know that you are not alone!  May the God of Perfect Peace be with you, giving you Joy and Gladness, Hope and Thanksgiving...right in the midst of your pain!

I don't want to close without saying that i don't think you should ever stop praying for healing!  God tells us to continue asking....in faith!  So, I will continue asking and believing for healing...either until I am healed or I am in Heaven!


There is a good story that explains what it is like to live with Lupus, Fibromyalgia, Chronic Fatigue (or many of the diseases on the list above).  It's called the 'Spoon Theory'  it has helped me to explain my situation to friends and family in a way that is easier to understand.

 http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/


Footnotes
  1. "Chronic Conditions: Making the Case for Ongoing Care". Chronic Care in America: A 21st Century Challenge, a study of the Robert Wood Johnson Foundation & Partnership for Solutions: Johns Hopkins University, Baltimore, MD for the Robert Wood Johnson Foundation (September 2004 Update).
  2. 2002 US Census Bureau