May 2014

Health & Wellness: My Invisible Illness

Author: Andrea Caesar

Today’s society demands that women be superwomen. We are to be powerful professionals, Pinterest goddesses in the home, sensual lovers, mothers who cut nitrate-free turkey sandwiches on homemade bread into cookie cutter shapes for their kids, all while staying well-groomed, in shape, and cheerful.

But a large part of society is struggling to keep up with this standard, not only because it’s absurd, but also because they suffer in silence. I am one of them. I suffer from Borreliosis Complex, better known as Lyme disease, and have since I was 11 years old. Lyme is a complex set of infections involving all parts of the body systems, but in particular the nervous system. I don’t know what life is without Lyme, as I went undiagnosed for 26 years. This disease has virtually all but eaten me alive.

Lyme is not the only invisible illness. Many people suffer daily physically, mentally and emotionally without others even being able to detect it. Some of the many invisible illnesses are chronic fatigue syndrome, fibromyalgia, rheumatoid arthritis, Crohn’s disease, IBS, diabetes and many more.

When I make it out of the house, I am told, “You look great!” and of course I appreciate it, because no one wants to hear, “You look so tired,” or, “You look awful.” But believe me, people do say those things.

You may not see it, but I have some occasional balance issues. In fact, I ram into so many things that I have bruises all over my body. And because I have short-term memory problems, I can never remember where they came from. But, I can walk—even when you don’t see the challenges I sometimes have with standing up and getting my balance, pleading with my hips to cooperate with me. Yesterday, halfway down the stairs, my legs gave out from under me and I went tumbling down the rest of the way, covering my head with my hands. But I “look great.” So much for that homemade bread.

I have had hallucinations, but you can’t see me having them. I have joint pain, which unless I told you or unless you were there with me when I dropped the $1,000 bottle of medicinal tincture on the floor because my right elbow gave out, you’d have no idea. And while I may walk slowly at times, you probably don’t know that sometimes it feels like I am walking on shards of hot broken glass. Did you know that I have had no feeling in my shins for 23 years?

You might notice I get grouchy or teary, especially when my daughter is being a typical three-year-old and doesn’t look happy to see me when I pick her up. She has a hard time making transitions, and my arrival sometimes interrupts something she is enjoying. When this happens, she throws a fit when she sees me, which makes me cry in front of all of the teachers and other parents.

But beyond my tears, can you see the war going on in my mind? I try to rationalize what I know is true: that she is not unhappy to see me, but simply is not ready to finish her activity. And while some people might think that I am unstable, I am a rock when it comes to this illness, and I do not intend to back down. So much for being the perfect Pinterest mommy.

You learn who your friends are when you are invisibly sick, because unless you have the “OMG” factor, the big words like cancer or you clearly look frail or ill, or have had a dramatic accident, people don’t see you as ill when they see you dropping your child off at school every day or driving through town. When you have a visible illness, people rally around you. When it’s invisible to the eye, many times you are left in the dust; because even though people know you are ill, they assume you are feeling better because “you look fine.”

Sometimes I feel invisible. Sometimes I want to scream at the top of my lungs, “No, I am not all right,” just begging the universe for someone to see me. REALLY see me. Beyond a few family members and friends I can count on one hand, very few people really see me, and even they don’t know the half of it. And maybe that’s my own fault. Maybe I have been too guarded for too long to actually let anyone in on any profound level.

My daughter really sees me. I think children have an incredible capacity to sense everything around them. Every time I leave her, I tell her again and again, “Mommy always comes back.” Last time I went to D.C. to see my Lyme specialist, Joseph G. Jemsek, MD, FACP, she held my face with her little hands and said, “And maybe this doctor make you feel better, Mommy.” She actually calls him my Dr. Superhero and is convinced he wears a cape.

I hit my head a few weeks ago when I lost my balance and banged it on the kitchen island. I screamed. She came running and sat right next to me and said, “Okay, what can I do for you, Mommy?” She sees me even when my invisible symptoms are at full force. Said my three-year-old rock, “Maybe we cannot have music in da car today, Mommy, so it don’t hurt your head,” without me having said a word about my head being ready to explode. What would I do without this child?

And so, here I write to you in a very vulnerable state, because I am surrendering some of the control that I have held onto for so many years. I am putting words to what has been invisible for so long. I am pleading with you to understand that I am not lazy. I am exhausted. Always. Physically, mentally, emotionally, and spiritually exhausted. My tank is empty, and although I will likely greet you with a smile, I am not okay.
Through my journey, I have learned that I am responsible for what I put out in the world, and I have never had a problem taking accountability for my words or actions. And so, it is with shaky hands and great emotional discomfort that I let you deep into my mind full of Lyme.

If I can help other people with invisible illnesses feel validated, then I have completed what I set out to do. To those people: I know it’s not in your head. I know you are not making it up. I know you hurt. I know you cry aloud and within. And while I will never say I know how you feel, I will say I see you and I care. To me, you are not invisible. 

Andrea Caesar is an author, entrepreneur, and mother who suffers from chronic Lyme disease, an illness not recognized by some in the medical community. In A Twist of Lyme: Battling a Disease That “Doesn’t Exist,” Caesar recounts her now 28-year struggle against undiagnosed Lyme disease as well as the harsh physical and emotional toll of her recent treatment. A Twist of Lyme is available at amazon.com. For more information, visit twistoflymebook.com.

  1. Andrea Caesar’s article hit home for I too suffered with an invisible illness. For more years than I can remember Fibromyalgia took its toll. I tried everything I could find both medical and holistic. Nothing helped. The chronic debilitating pain, brain fog, irritable bowel syndrome…increased in intensity
    No it was not all in my head. And if every part of my body that hurt were bleeding, then you could begin to understand how I felt.
    Unable to work, look after myself, my home or my beloved dogs I was considering a nursing home.
    Then I found Joy of Healing. Because of this unique mind, body, spirit wellness work I have been both pain and prescription free for more than thirteen years.
    Never give up in your search for wellness.


    — Janet Komanchuk    May 23, 07:58 pm   

  2. Thank you so much for sharing your incredible story! I haven’t yet bought your book, but plan to. My good friend was just diagnosed with Lyme disease and has days she feels just so lost and alone because no doctor understands how she is really feeling and they don’t seem to have much compassion. I will share this with her<3 Praying for you!


    — Christine    Jun 11, 09:46 pm   

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