I have the deadly disease known as Lupus. The version of Lupus I have is the most common, Systemic Lupus Erythematosus (SLE). True to its name, SLE is a systemic condition throughout the body. In addition, I have Lupus Anti-Coagulant and Lupus Anti-Phospholipid which causes my Lupus to impact my blood.
So What Exactly Is Lupus?
In short and perhaps unscientific terms, SLE is my own immune system betraying me and deciding to wage war upon various systems in my body. My immune system incorrectly targets these systems as enemies and marks them as invaders. Then it targets my cells, tissues, and organs in those systems for destruction. This destruction begins with inflammation and its other biochemical weapons and agents to kill cells and shutdown organs. My Lupus likes to focus on vanquishing its own perceived axis of evil in the form of my circulatory, nervous, digestive, and musculoskeletal systems.
My SLE also features some collateral damage in the form of Anti-phospholipid antibody syndrome, Raynaud's Syndrome, Transient Ischemic Attacks (TIAs aka mini-strokes), seizures, heart inflammation, costochondritis, tachycardia, increased liver and kidney activity, Osteoarthritis, photo-sensitivity, muscle weakness, sporadic and severe nerve pain.
The Wolf Within Me
Lupus is currently not curable. My Rheumatologist uses the analogy that my immune system is a wild animal that we attempt to keep caged in remission with powerful and yet toxic medications. So of course given its “Lupus”, I associate a wolf as the wild animal within me. Frequently the caged wolf is still able to take a swipe at me from within the bars of cage. And many times the wolf breaks free to wreak havoc on me until medications are increased or added to suppress it again. These events occur despite me taking all my medications daily as instructed. My wolf has its own plans for me it seems. And surprisingly enough, those plans may include me becoming a better person.
Perhaps I'm A Better Man?
Having this disease has taught me many lessons. The life I believed I once had is lost and most likely gone forever. Coping and surviving with the disease continues to be a struggle daily, but also a surprise opportunity for learning and adaptation.
As a husband with Lupus I've learned to appreciate the continued support my wife gives me.
There were many hard and difficult times leading up to my diagnosis. I knew I was sick for years, but Doctors felt otherwise even when confronted with symptoms and facts in the form of lab results (high white blood cell counts), scopes, MRIs, and CT scans. Those very Doctors had me feeling like I was crazy and had me filled with the self-doubt of being a hyponchondriac.
My wife, with doubts of her undoubtedly from the repeated Medical Professionals stating "nothing wrong", stood by me and supported me. And for that I am eternally grateful.
As I battled this illness for years and it wore me down with pain and fatigue, I grew frustrated and angry. Many times I would use anger just to trigger adrenaline in order to push myself forward and function. My wife stood by me through all of it.
When I first me my wife I was in very good shape as a gym rat and someone who participated in both indoor spin classes and road bike rides of up to 50 miles on a weekend morning. As I became sicker and sicker, my energy and ability to work out plummeted and my weight exploded including a gains of 50-60 lbs in a single year coupled with one dramtic loss of 45 lbs in a month (Doctors still refuse to believe that...of course). Still my wife stood by me through it all.
I've grown to appreciate and cherish my wife perhaps even more than the day we married. And I hope she knows I am here to support and take care of her for as long as I can.
As result of the disease I hope I've become a much more patient, relaxed, and appreciative man for the times ahead.
As a father I hope and believe my struggles with Lupus grant me strength, understanding, and empathy for my daughter.
I appreciate more than ever the time that we have together. And I gain strength from hopes and prayers that this is occurring to me in order to spare her in the future. Whether that is the plan or not, I welcome the thought that it is. I gain fortitude from hoping I play the role of hero to protect her.
I also hope that having Lupus grants me empathy, patience, and understanding to the things she will go through in life. I will be here as long as possible to support her.
I will let my lessons in life, specifically with medicine, be guidance to her and to her future family. I will never ever let a Doctor discount what she is saying or reporting. I will teach her that in a field that is not an exact science there are also individuals who are quick to judge and dismiss patients, apparently assuming the worst in people as fakes.
As a manager and a leader at work, Lupus has taught me the concept that "everyone is fighting a battle that you don’t know about" and to be kind and reserve your judgments. Never dismiss someone's story or hardship as exaggerated. It's quite possible in some circumstances that it is exaggerated, but what do you gain from disimissing or judging? And if an exaggeration, then a distinct cry for help or attention to something going on for that person.
I once again hope that as a manager and leader I am more patient and understanding. Also that I live and manage by the principle of "health, family, and self-care" first. Health and family being the only things that remain with you after a job is done with you. Self-care being the important element of balance to safeguard your health and family while working.
I try to make effort each day to be kind to my coworkers and customer colleagues by asking how they are, how their families are, and to follow up when anyone ever shares about sickness or ailment. I try to make myself available to be an active listener. This given so many are dismissive of illnesses they don't understand or feel uncomfortable discussing.
Finally, I've gained the strength to teach others about Lupus after years of hiding it from a wide audience. I am no longer afraid of what people think of me nor any perceived impact to my career. If they don't know the type of person or worker I am, then in my assessment they were never going to pay close enough attention to know regardless of Lupus or not.
If a current or future employer chooses to pass me over out of unspoken concerns about my having Lupus, well then its their unfortunate loss given my work effort has spoken for itself for years. You don't stay many years at a company if your output doesn't match your talk. Perhaps they should worry more about chronic talk in the workplace and no action versus chronic illnesses.
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