Stop Judging & Start Loving: Not All Chronic Illnesses are Visible
A personal story from a mom who knows firsthand
What I wouldn't do to have my children healthy. As a mom of 3 daughters, I have come to realize health is one of those priceless intangibles that money just can't buy. If you have it, if your family has it, if it's attainable for you through diet, exercise and self care, then do it; by all means do it and appreciate it. If you have your health and your family does as well: hear me: appreciate it. It is a precious commodity not afforded to all. When a family member suffers, we all suffer.
Our youngest daughter, Colbi, 17 has severe Scoliosis and our eldest daughter, Chloe has had a long-drawn out journey of her own. Our journey through undiagnosis and misdiagnosis for Chloe, has spanned many long and arduous years. She was in college when our efforts became more and more aggressive as her symptoms increased and spiraled out of control. One of her symptoms was back and rib pain, which one doctor concluded a spinal epidural of Cortizone would alleviate her symptoms. We naively believed all we were told and agreed to the procedure. This however would result in major complications that would result in my daughter being bed-bound for up to 3 weeks. At this time she could not brush her hair, put on her boots, as she could barely function. Her boyfriend, now husband Brandon, would have to assist her in her day to day life. Her main symptoms were brain fog, emotional issues, breathing issues, depression, agitation, joint pain, major headaches, night sweats and the list goes on and on. Some she still battles, others not as much.
Our frustrations only mounted as most doctors only wanted to treat her symptoms, not discover the underlying cause. Blood, sweat, tears, prayers and more tears, led us on a endless and frustrating journey that we thought would never end. And to be honest, we are still on it.
Long story short, after many years, scores of doctors, refusal by major treatment centers and also many over-prescribed guesses; my daughter only received a proper diagnosis after stepping outside of the realm of orthodox medical opinions and practices. Desperation lead us to a well-known area doctor in Osteopathic Medicine, who would run a gamut of blood tests, (10 vials) and would finally properly diagnose her with Lyme Disease.
I am happy to say, Chloe miraculously graduated college and received her degree in 3 years and was married in July. Her wedding was extremely emotional for us, especially those closest to her who knew the depth of her struggles. When the minister would ask her husband if he took her "in sickness and in health," I grieved heavily in that moment, at the sad revelation that Brandon had never known her in anything other than sickness. I prayed this day, she would have no pain as she deserved nothing but happiness and beauty on her wedding day. I didn't want her to even think of her illness. With the threat of rain looming all day, the skies opened up at the point she was to walk down the isle. The clouds quickly dissipated, leaving it to be the most beautiful day ever. The day could not have been more perfect.
Today she is better as we strive for remission. She is currently in treatment, a 9 month plan which has now turned into a 12 month plan, as her symptoms have improved but are not gone. She is labelled as having Chronic Lyme. Lyme is difficult to treat for many reasons. The disease itself is actually parasitic which the parasites move and hide; not only that but they adapt and have a biofilm which also makes it difficult to treat. It creates co-infections at different places throughout the body which makes everyone's symptoms vary. They wreck havoc on the body, all over the body and at times leave lasting effects. Hard to diagnosis, hard to treat. That is why some Lyme patients are in wheelchairs and some are not. All Lyme patients look different, but I will guarantee you; they are all in immense and debilitating pain. Their tolerance for pain is beyond what I can fathom or what I could have ever endured.
Then comes the judgement, the reason for my article. Lyme is one of those "invisible" diseases as many who look at her, think and sometimes rudely say, "Well you don't look sick?!" How audacious and offensive to think, let alone say, as I would not wish this road for my worst enemy. However, the list of "invisible" diseases are vast and a few include: Lyme, ALS, Fibromyalgia, Lupus, MS, arthritis, chronic pain from injuries and cancer, not to mention many mental illnesses that are not visible by the naked eye.
You see, their battle is two-fold. It's bad enough these precious people, with these horrific conditions, have to battle their affliction but also have to battle the world as well. Truth is, they should not have to defend their condition to anyone. We need to tap into compassion and empathy and reach for understanding. We need to stop passing judgement on those who may have a handicap placard and "look" normal. Chloe had a temporary handicap permit during her last year in college. She needed it; sadly and desperately, only to receive many glares, stares and eye-rolls, because she was pretty and didn't "look sick". We need to stop being skeptical that all people are scammers or schemers, who have "made up" their disease for "attention" or special treatment or favors.
Know that those with chronic pain and illnesses, have battled doctor and after doctor, treatment after treatment, insurance after insurance, and have explained tirelessly to the masses of a world that lacks understanding. In addition, have probably been ridiculed to a deeper degree than most of us would ever know. Know they are warriors who often smile beyond the pain. They smile through and beyond the pain because even though days are dark, unlike me and you, they rejoice at having a good day. Also know their definition and our definition of a "good day" is quite different. Their "good day" is one that's not perfect, it's simply one in which they leave their bed, bedroom or house. A "good day" to them, is a day, not with no pain, but less pain. A "good day", is one where no fights, frustrations or turmoil arises. A "good day" is one that is simply better than the average. A "good day" is one where they don't have to defend their symptoms or their disease. Isn't that a lesson we all need? We need to stop judging and start loving those with conditions we can't see, and see the world as they do; blessed to be alive. Let's love them through this, hug them, validate them, listen to them, and aid them by understanding, all which, for them, will help make their day...a "good day."