A Guy's Perspective on Coping With Lupus and Fatherhood
I grew up in a small town in Illinois. I now live in a small town in southwest Virginia, where I reside with my wife and three children. I was diagnosed with lupus in the summer of 2007. As of this writing, I am 37 years old.
Having had lupus for the better part of 10 years, I have moved through several stages of acceptance with my illness. Denial was definitely a big part of it in my earlier years; I would frequently experiment with my medication and my personal limitations, and it would sooner or later result in a disease flare. As recently as a year ago, a brief remission gave me false hope that the disease had somehow gone away.
In the beginning, my symptoms were primarily the classic butterfly rash and occasional joint pain with a fever. As the disease has progress, symptoms have diversified greatly. At one point, I was experiencing TIA/stroke-like symptoms, blurred vision, and speech impairment. My current greatest challenge is chronic kidney disease, and a seeming knack for developing pneumonia and serious upper respiratory infections at inopportune times. This disease is usually invisible for me, but it has definitely presented itself visibly as well. Swollen joints, terrible rashes, and even a recurring knee injury that occurred as a result of muscle weakness have affected me.
My greatest challenge through all of this is feeling like I cannot properly take care of my family. Through the course of the disease, I have been fortunate enough to remain gainfully employed. It has proven extremely challenging at times, and required significant cooperation from my manager and Human Resources department. I could not have asked for a better support system from my employer, and am extremely grateful. I manage a wonderful and supportive team of IT professionals, and I consider many to be good friends. Even so, not being able to play outside with the kids and perform physical activities at a normal level has been tough. I occasionally feel that I let my family down as a parent and husband.
From a personal perspective, I feel a bit “different” being a guy with lupus. Not really discriminated against or treated badly, but kind of an oddball. A lot of what I hear from others is that “I thought only women could get lupus.” This applies to face to face interactions and many websites about lupus.
As a guy, I feel especially obligated to provide for my family. Not in a sexist way or anything; it is just how I was raised. When my lupus flares, I feel like I have failed in my ability to do so. I have taken a couple of approaches to help in this area. First, I try to avoid anything that may be considered a “high-risk activity.” I have also taken up cooking. I absolutely love cooking for my family. I believe I inherited this from my mom and my grandmother. As far as physical activities with the kids, it is rather limited — mainly due to a knee injury that was indirectly caused by joint/muscle weakness a couple of years back. My ACL snapped after a fall, and I am not a good candidate for surgery due to disease activity. I enjoy taking them to the playground, swimming, and on as many family trips as possible while they are young. I am a bit jealous of dads who can do more with their kids, but I truly do my best to keep up where I can. An example is the Warrior Dash in Ohio recently. I did not participate in the run, but I was there to cheer my wife and son on.
While this is my greatest challenge, it is also my greatest motivation to fight through the illness and symptoms. I have let go of a lot of people in my life; some due to not understanding the fact that I cannot function as a person who is healthy, and some due to simply choosing to keep close what matters most to me, and focusing on that. The constant in my life has always been my family in Virginia and back where I grew up in Illinois. My wife and kids are my best friends and reason for living. At every opportunity, I will cook dinner for my family. I will bring my wife breakfast, send her a rose or simply say “I love you” every chance I get.
Most importantly, and my means of coping: I focus on what I can do and not so much what I can’t any longer. This has been my key to happiness in my fight with lupus. The ability to share what I have learned over the last 10 years, as well as learn from others, has been very helpful and is a form of therapy in and of itself. I strongly encourage others to participate in resource groups (even if it is just online). Knowing and adhering to your limits is important as well. Not everyone can or should push themselves too much harder. Be smart.
To any other guys out there with lupus, please understand that you are not alone. Though we may be fewer in number, the realities of the disease and complications are no less significant. It is that much more important to share your story of success, as well as difficulty, with others. Don’t just be a minority — be a strong minority.
I am from a small town west of Chicago, IL. I lived in and around Chicago from 1998-2008, where I completed my college degree in Information Technology and my enlistment in the Illinois Army Guard. I currently live in a small town in Southwest Virginia with my wife and three children. My lupus story really began in 2004-2005, when I began experiencing joint pains and a butterfly rash. These problems became more persistent through 2006, and in 2007 I was hospitalized with a very high fever. After several days of tests and numerous consultations, a lupus diagnosis was returned. My life was changed forever. I have experienced many complications from this disease, including but not limited to: butterfly rash, swollen joints, stage 3 chronic kidney disease with renal hypertension and fluid retention, neuropathy, and stroke/TIA like symptoms. Kidney and upper respiratory issues have hospitalized me several times since my diagnosis. Rheumatologists, nephrologists and Mayo Clinic, have worked on my case. I experienced complete renal failure in mid-2017. I began dialysis and seeking a kidney at that time. My wife is a hospitalist nurse practitioner, and administered my home dialysis treatment for 2 long years. She and my kids are what keep me going. In July of 2019, I was blessed with a kidney transplant. While lupus and kidney disease are very real parts of my life, I am staying as active as possible and making the most of everything. I enjoy spending time with my family, reading, cooking, and traveling when possible. I currently work full-time for a defense contractor. Prior to dialysis, I supervised and managed several teams of IT support professionals. The opportunity to do so was a longstanding goal, and one way of "beating" the disease. My last management assignment was a team that supported a state's Family Protective Service, which was tasked with protecting the elderly and at-risk citizens of all ages. It was both challenging and rewarding. Ultimately, the state mandated an in-sourcing of IT services, which happened to correspond with my timeframe for dialysis. Immediately following my transplant, I began pursuing opportunities related to advocating and helping those in need; Specifically, those with illness and other disabilities. A part-time job with The Mighty became available, and I applied for it without hesitation. I had written an article about being a father with lupus a few years back, and wanted a chance to give back. Once I was cleared to return full-time, I sought an opportunities within our defense organization's Talent Acquisition team. Seeking and placing individuals who are passionate about their work, as well as benefit the Company, were a passion of my management role. I was blessed with an opportunity within that team early this year. It allows me to build upon that passion of helping others in their journey to find a career. I love working with my teams at both jobs. While my health has been relatively good for the past several months, I know how quickly that can change, and try to live life the best I can.
nick-hansen