A Window Into the Isolation of Lyme Disease and Chronic Invisible Illness

Isolation even sounds like a lonely word. To be isolated is to be set apart, to be alone. Lyme disease is an isolating illness. Like a deserted island in the middle of a vast ocean, Lyme patients are an island to themselves.

Facing the diagnosis of Lyme disease thrusts you into a frightening world. Setting you apart from mainstream medicine, the medical help that is so desperately needed is often unreachable. The common, flawed medical opinion sets the patient apart from understanding. Apart from sound medical advice. Apart from a clear path to wellness. Apart from any real hope.

This is Lyme disease. Living life in a proverbial box that has invisible bars preventing any means of real escape. The bars of chronic illness. A silent prison.

Solitude is something that I struggle with on a daily basis. Lyme disease has a way of forcing isolation upon you. You do not feel like participating in life in general. Most of the time just carrying on a normal conversation is exhausting. I am isolated not because I am physically alone, but because I do not have the energy and endurance to interact with my family and friends.

I spend many of my days in silence. Not because I do not have anything to say. I just simply do not have the energy to talk. I am often thought of as being a quiet person. My Lyme fatigue and pain have played a huge role in dictating this silence.

It is all I can do most days to put one foot in front of the other. To do the things that have to be done. Simple tasks to be sure, but necessary pieces of daily living. Things like going to appointments, taking care of my young children, doing the laundry and cooking simple meals.

Small talk takes too much energy. So, I rarely participate in surface chats. More often than not, I find myself completing certain tasks with tears running down my face. This is exhaustion, pure and simple. It is the voice that says, “I can’t go on.” I try to block out that voice quite often, instead choosing to listen to the voice that says, “I must go on.” To quit would be to give up entirely. I cannot afford to give up. My family depends upon me.

One of  my sons recently mentioned that my husband told him I used to be a vibrant person. That in past years I was very energetic and enjoyed life to the fullest. When I heard this, it made me terribly sad. Lyme has slowly taken away so many bits and pieces of my life. When I look back over the landscape of my life I can see the steady falling away of the things I used to love most in this world. The special “extras” in life that make living so colorful and worthwhile. Lyme is a thief. It takes and it takes, but it never gives back.

During a recent extended weekend I gained a new perspective of the isolation of my chronic illness. I spent several days with my extended church family. I was in a crowd of several hundred people for the better part of four days. Yet, I felt alone. Alone with my pain. Alone with my struggle to keep up. Alone with my thoughts. Alone with my fatigue. Alone with Lyme. Just alone! Though this was absolutely no one’s fault, it is the truth!

As I sat in this gathering, a place filled with much love, friendship and fellowship, I was not physically alone. I accepted many smiles, hugs and even an occasional kiss on the cheek. But, when it comes to the daily inward and physical struggles that go hand in hand with Lyme disease, these experiences are often accompanied by a very strong feeling of isolation.

During this particular weekend, I was approached by several friends. Each friend in turn told me how well I looked. One person in particular was not even aware that I struggle with Lyme disease. Upon learning this fact about my life, she commented that I always looked like I was doing so well! That I looked so put together and healthy. This is a common misperception that goes hand in hand with invisible illnesses.

This is the mask of chronic invisible illness. I put this mask on every time I go into a public place, to any social event. Even when I am just out running typical everyday errands with my family. I might look well on the outside; on the inside I am literally falling apart. I am a master at acting healthy.

The myriad of physical struggles that I face each and every day go unnoticed by virtually everyone around me. It is a silent epidemic that drains me of all necessary energy. It is my reality. So at the risk of sounding like a habitual complainer, here is a ticket to my inner struggles. A trip through my everyday realities. A window to my isolated world. A window looking into the struggles of chronic Lyme and chronic invisible illness.

• No one sees my struggle to get out of bed every morning.
• No one sees the constant muscle spasms in my arms, neck, shoulders, back and legs.
• No one feels the deep toothache pain in my knuckles, toes, ankles, hips, knees, elbows, shoulders, and spine.
• No one feels the constant tremors that wrack my insides. Most of the time, I feel like I’ve scarfed down five espressos in a matter of minutes.
• No one hears the constant ringing in my ears. Think of cymbals being clashed right next to your ears and then dealing with the repercussions of that event all day long. Only there are no cymbals, the ringing is just there.
• No one feels the constant migraine like headache in my temples and gripping the circumference of my head. Like heavy hands with an iron grip.
• No one feels the buzzing, electrical-like jolts that travel around the base of my skull and up over the top of my head.
• No one feels the side effects of the many supplements, tinctures and medicines that I take for my treatments.
• No one feels the tightness in my chest and throat. (“Thank you bartonella,” said with extreme disdain.)
• No one feels the squeezing, crushing pain of costochondritis in my chest.
• No one feels that awful smothering feeling that stifles my breath. (“Thank you babesia,” said with much sarcasm.)
• No one notices that my left foot drags slightly when I try to walk too fast.
• No one feels the numbness of my toes and fingers. (Thank you Raynaud’s disease — not!)
• No one feels the numbness over the left side of my face, remnants of Bell’s palsy from years before.
• No one feels the nausea that is my constant companion.
• No one feels the clenching pains in my stomach before, during and after every meal.
• No one feels the fogginess and strange thought patterns that cloud my mind minute by minute.
• No one realizes that my heart is beating over 100 beats per minute as I sit quietly listening to a speaker. (Thank you, tachycardia.)
• No one knows that my blood pressure is often either way too low or extremely high. Often jumping between one extreme and to the other in a matter of seconds.
• No one feels the faintness, the dizziness when I stand.
• No one feels the tension and searing pain that builds in my lower back and shoots down my legs due to bulging discs.
• No one sees the terrible ache in my neck from severe bone spurs and osteoarthritis.
• No one feels the bone deep ache in my groin or the bulge near my hip joint.
• No one feels the intense pain from the curvature in my middle spine.
• No one feels the intense itching of my scalp due to psoriasis. Or the crawling feeling that creeps over my skin and makes me silently squirm with itchiness all day long.
• No one sees the constant insomnia that accompanies me to bed each and every night.
• No one can feel the crushing fatigue that demands I lay down. That makes every movement, every word I speak, every task I try to undertake a form of torture. Fatigue that insists I must go to bed right away. That insists I cannot go on.

No one sees or feels these struggles. I don’t expect them to! I rarely talk about them. These are simply the isolating sensations of every day life for me. They are inner struggles, inner sufferings. They are my “normal.” They are the many pieces of the puzzle that are Lyme disease.

Dealing with these symptoms on a daily basis is difficult at best within the confines of my own home. But, when I try to step outside of my small world and actually function and attend social gatherings, these symptoms escalate to mountainous proportions. When I try to engage in any kind of social activity, my life quickly becomes a nightmare. An extreme version of “A day in the life.” Like one of those terrible reality shows where drama lies around every corner. This is what it is like when I try to be a part of life. I pay for it. Plain and simple. I have to pay for it, every inch of it! Gone are the days of living spontaneously. Every activity must be calculated and planned for.

As isolating as it may seem, I have come to enjoy the peace and quiet of home. I manage best when I stay inside the small compartments of resting and quiet days. I literally live for the days when I can actually rest. The days when I do not have commitments. Those days are my version of heaven on earth. Days when I can let my constant guard down and just be. Days when I do not have to wear the “mask of wellness.” Days when it is OK to be sick.

Everything else outside of that small box is a struggle. This is what life is like with Lyme. You lose contact with friends. You lose contact with family because at the end of the day when the choice is presented between a phone call and a bed, you take the bed hands down every time. When you have that chance to meet for lunch or invite someone over for dinner, you cannot handle the consequences that go along with the commitment. You choose rest over socializing. This is chronic illness. This is chronic late stage Lyme.

On the flip side, while I do find being in a group isolating, due to the many silent struggles I face with my illness, I have learned that sometimes, I need to make the phone call. I need to reach out to others instead of  climbing into bed. I need to put my struggles on the back burner, if only for a moment. (Even though in reality I really can’t truly set them aside. They are chained to me whether I want them to be or not.) I can hand my worries to God and step out in faith. That is what I did during that recent weekend gathering.Even though it was very difficult and I will pay for it for quite a while. It was nice to be a part of the group in some small way. To be in the “crowd” so to speak. Lyme disease can feel very isolating at times, because so much of the struggle is silent and hidden from the human eye. It helps when you are surrounded by family, friends and fellowship. Even if they can’t see the inner struggle, they appreciate the effort I made to be there. Isolation is often a frame of mind. I just have to learn a balance in sharing bits of my struggle with others to help them understand my limitations.

Isolation in chronic illness is often unavoidable. It comes with the territory. I have accepted it. Even though I often worry about sharing too much, about being a burden to others, I can make all the difference by being willing to share my journey — by letting others into the small compartments of my life and then letting go and realizing that everyone has struggles. Yes, we are all different. But we are also all human beings. That is what brings us together and keeps the isolation at bay. We need each other in some small way. Like that familiar quote, “Friendship isn’t how much we talk. But instead, how much we are there for each other in times of need.”