“We must let go of the life we have planned, so as to accept the one that is waiting for us.”
– Joseph Campbell.
Chronic illness is hell. No doubt about it. The physical pain, sheer exhaustion, crumbling of body systems, coupled with feelings of defeat, guilt, and shame, are horrific to say the least. It can reduce you to your very core. It can rob you of the person you once used to be. It has no mercy. Chronic illness can often feel like a journey to an unknown destination; it shifts the essence of your being to a place so remote that your life appears like a hazy vision. The difficult journey that stems from ill health also brings unexpected change – not only is it a transformation of our physical self, but it is a metamorphosis of thought, perspective, and spirit. As a hypothyroid and Lyme disease patient, I have experienced my body disintegrating and my soul unraveling with chronic illness, but one thing is for sure: I have learned some valuable lessons.
My background: I have had undiagnosed hypothyroidism for the past twenty years, largely due to health practitioners relying on the lousy TSH lab test which always revealed a “normal in reference range” result. I have had glaring symptoms since my teenage years and have a very strong family history of thyroid disease that was overlooked by every doctor that I saw. Finally, after my health began crumbling at an alarming rate five years ago and after I began researching my ailments on my own, I discovered a physician who ran the appropriate full thyroid labs. My Free T3 levels were very low, Reverse T3 was very high and my adrenal function was teetering. I was clearly hypothyroid despite a “normal” TSH. This was only the tip of the iceberg. A much bigger issue was lying under the surface, wreaking havoc on my entire body. Since my hypothyroid diagnosis and many unsuccessful trials of various thyroid medication and adrenal supplements, it was finally discovered that chronic Lyme disease was the culprit for much of my declining health.
Before I comment on some of the lessons I have learned on this journey, I want to mention a few important things about Lyme. Many people over the years have criticized me for over-researching my condition to determine “what it was” that was causing my symptoms. I was a case for "Mystery Diagnosis" for sure. For years, I saw doctor after doctor with no progress or diagnosis. I had no choice but to resort to the Internet for help. My health practitioners were failing me. If it had not have been for my endless research and the patients I discovered in online forums, I would still be undiagnosed with thyroid disease and continuing to deteriorate from this silent killer known as Lyme.
Lyme and thyroid disease are two issues not to be taken lightly. If you suspect someone is suffering the symptoms of thyroid disease, please find a doctor who is knowledgeable about the appropriate thyroid labs. If you know someone who is still battling an unresolved, mysterious illness and is going in circles trying to get well, please investigate further and find a Lyme-Literate doctor. Do not waste time (since Lyme progresses). You do NOT have to exhibit a bull’s-eye rash and you do not have to have joint pain. Lyme can manifest as hundreds of other illnesses (fibromyalgia, chronic fatigue syndrome, MS and autoimmune diseases are just a few). It is known as the “great imitator”. My first testing for Lyme two years ago actually came back as a “negative” result. This is because the gold standard Western Blot test is extremely unreliable and is only appropriate for recent Lyme infections, not for detecting chronic Lyme. I also never had a rash and never had joint pain.
While I feel that I have lost some valuable years of my life to poor health, I have gained a few things that I think are fundamentally important and are a direct result of the change that occurs with a chronic illness.
I have gained understanding and compassion for others battling ill health or disease. The saying is true, “if you have not walked a mile in someone’s shoes, then you cannot judge”, and in many cases you cannot just tell a sick person, “maybe a nice walk will make you feel better”. Trust me, if taking a stroll really made the chronically ill feel better, there would be sick people walking until the cows came home. That is assuming they can even get themselves to walk. The sick will do anything to feel well again. And I mean anything. I will never underestimate a person’s struggle and suffering again.
Forgiveness. I have learned to forgive those who do not understand what chronic illness feels like and who often judge the behavior of those who are sick. The chronically ill do not aspire to become distant, despondent, or even depressed human beings. These traits are manifestations of the disease. Illness will corrupt the mind and hijack emotions. It will make a person appear unrecognizable in spirit. Low thyroid hormone, for instance, can cause depression, anxiety, mental slowness and brain fog, and the same can be true for Lyme Disease. These symptoms take a terrible cognitive and emotional toll on the affected individual, their families, and friends. The sick individual becomes a shell of the person they used to be and relationships suffer. Despite the spiraling decline of the Self, these symptoms can give way to forgiveness. I forgive myself for being the person in my former life who hastily judged and misunderstood the horrors of chronic illness. I forgive the universe for the diseases that cripple the lives of many people and, most of all, I am finally absolving myself from feelings of blame and guilt. I am coming to an understanding that prohibiting forgiveness on many levels can be just as crippling as any disease in itself and may hinder the healing process.
I have learned (and am still learning) patience and perspective. I cannot help but recognize impatience and triviality when I hear statements like, “Ugh, I cannot WAIT until my dishwasher arrives... I cannot stand doing dishes by hand (for a week)!” I used to be this impatient, too. Illness will change that. Illness will give you some perspective on the things in your life that are truly important.
Acceptance. Conquering this illness is part of my existence now. I accept that. I also accept the death of my former self and acknowledge the person I am becoming, as frightening as that may seem. However, I will never give up the fight to regain my health. Acceptance does not mean complacency, nor does it mean that the pain or fatigue has gone away at this point. Acceptance simply means I am doing the best I can and allowing time to reveal what is yet to come.
I have gained inner strength, even when my body could barely move and when I suffered from relentless brain fog, disorientation and mental lapses. To all of my fellow Lymies, thyroid sufferers and others battling chronic illness: You are brave souls for continuing to fight through every day with the effects of disease. You are the strongest of warriors for reminding yourselves, day in and day out, to “keep fighting” even when every cell in your body is withered and telling you, “no more”. On your road to wellness, please keep in mind the successful transformations of others who have shared your journey. Their path to a new restored life will keep you going. Take in their guidance. Seek their assurance.
I have gained a sense of discovery about myself, purpose and our relationship to each other in this world. As disease peeled the layers from my physical existence, I was forced to become acquainted with parts of my being that I never knew existed. It has allowed me to unify my conscious and subconscious, shaping my dreams to develop an emerging new person. I truly believe there are reasons for the unexpected and reasons for the people we meet along the way in our journey. Each of us has a destiny and sometimes the destiny is found in the most unlikely places. There is a famous quote by Jean de La Fontaine that goes something like this: “A person often meets his (or her) destiny on the road he (or she) took to avoid it.” Your course will always find its way to you. Guaranteed.
There are things that I am still learning, but overall this experience has changed me in more ways than one. In a way, I feel grateful even when illness squashed down on me like a five ton elephant. I feel grateful for finding people who have helped me discover the root of my illness. I feel grateful for the special people in my life who have guided me on my journey and reassured me that better things are to come. I am appreciative of the perspectives that I probably would not have had the chance to gain if I had never fallen ill. Maybe discovering these things will become a turning point to my healing. Maybe healing means change.
Be well, brighter days are ahead. Savor every moment of good health that is yet to come.
Denise is an artist who works in watercolor, mixed media, and digital image collage. Her themes deal with intimate connections to the natural world, mystery as beauty and spiritual wonder and transformation. The image above is a self-portrait and depicts a chambered nautilus. The nautilus is an ancient symbol for change and renewal since it grows increasingly larger chambers throughout its life to accommodate its new self. Website: www.DeniseRFleming.com