Here are some thoughts from a dad as we begin the summer vacation season and the 4th of July holiday … but these are important for any day of the year … because you are a dad 365 days a year!
I am a dad with an amazing partner, 2 wonderful kids, and I happen to have lupus. As difficult as it has been for me to have lupus and to be a man with lupus, it may surprise you how much being a father with lupus can have its own challenges. As it turns out, the summer shines an even brighter light on some of these challenges.
First, as you probably know, lupus is a chronic autoimmune disease that is commonly considered to only affect women. There are plenty of studies with different statistical averages,* but it is commonly agreed by most that at least 10% of all those living with lupus are men. Of course, that number could be significantly higher given the social pressures that some men feel to avoid seeking medical attention for some lupus symptoms and the tendency for men to be diagnosed with later in the progression of the disease.
That being said, if there are about 1.5 million people in the United States with lupus, then at least 150,000 are men … and many of those are dads like me.
Fatherhood and Lupus
So, how does fatherhood, particularly in the summer, affect me and my lupus? Think about all of the cultural stereotypes regarding fathers that pervade just about every culture on Earth. Dads, as males, are often expected to be strong, tough, active, and energetic in the face of life’s challenges – including their lupus.
At the same time, dads, as parents, are also expected to be generous with their energy, patient with their strength, and selflessly protective of their children. This is a role we accept as parents, but lupus makes meeting those expectations, at times, difficult. So, what is so special about the summer and the 4th of July in particular?
Well, think about the stereotypic 4th of July – the picnics, parades, softball games, and countless other outdoor activities. All of these come with the expectation that everyone wants to be outside in the sun having fun. Yet, as you may know, photosensitivity is a very common problem for those of us with lupus. For a great overview of what you should know about photosensitivity and lupus, check out the KFL blog, “Lupus and Photosensitivity: When the Sun is Your Enemy.”
In my case, I do not get rashes or significant changes in skin condition from the sun in moderate doses, but I do feel its effects in terms of fatigue, headaches and a general feeling of “lousy-ness.” This can happen pretty quickly, and so, I wear hats, long-sleeved t-shirts or sun-shirts, slather on the sunscreen and look for the shade wherever I can. What is more, if I choose to not stay in the shade, I feel a ticking clock in the back of my mind counting down the time for when I will be paying for this time in the sun, with time on the couch at home in the dark!
This is part of the problem of summer parenting/fathering with lupus. We all want to be outside with the kids. I expect myself, as the dad, to go hiking with my kids this time of year. I even dream of catching some fish and coming back to grill at a campsite – and I dream of being able to do this without worry or self-conscious effort.
Unfortunately, the symptoms of lupus can make the expectations for these kinds of 4th of July and summer expectations highly problematic. As a dad, I hear things like:
“That’s okay, dad. We can stay inside today.”
“We don’t need to go to the beach this weekend, next week is fine.”
“The smoke from the BBQ bothers me too.”
“Why do you have to laydown now, we just got to the park?”
These examples of my kids compensating for my limitations can be really difficult to take, but that is my reality. To modify the well-worn lupus meme of counting spoons, I find as a dad the pressure to not count in spoons, but to count in shovels!
Dr. Robert Lahita, MD, PhD, during a Kaleidoscope-sponsored symposium entitled “Men, Women, Love and Lupus,” described his experience with men who feel the obligation to be the breadwinners of the family. Though it is changing, society’s message is still is that men, and thus dads, have an obligation to be the breadwinners and provide for the family. Here is a link to an interview after the symposium: https://www.youtube.com/watch?v=t72tCrd3Qdo
Everyone’s experience with lupus is different. My lupus is quite unpredictable and tends to focus on fatigue, joint and muscle pain and headaches. I also have some kidney involvement with all the happy things that accompany that. I usually fight through them … until I can’t. Thankfully, I also have a loving partner and two great kids that “get” that dad has lupus. This 4th of July, we plan to go to the beach, so that the kids can play in the sand, and I can watch from shade, and no BBQ for us, I’ll be ordering pizza to go!
For an overview of the symptoms of lupus in men, see our Kaleidoscope blog on the topic at https://kaleidoscopefightinglupus.org/symptoms-of-lupus-in-men/
For tips on parenting living with chronic disease, see our Kaleidoscope blog on the topic at https://kaleidoscopefightinglupus.org/10-tips-for-parents-living-with-chronic-disease/
Somers, E., Marder, W., Cagnoli, P., Lewis, E., DeGuire, P., Gordon, C., . . . McCune, W. (2014). Population‐based incidence and prevalence of systemic lupus erythematosus: The Michigan lupus epidemiology and surveillance program. Arthritis & Rheumatology, 66(2), 369-378.
Lim, S., Bayakly, A., Helmick, C., Gordon, C., Easley, K., & Drenkard, C. (2014). The incidence and prevalence of systemic lupus erythematosus, 2002–2004: The Georgia Lupus Registry. Arthritis & Rheumatology, 66(2), 357-368. doi:10.1002/art.38239.
Ferucci, E., Johnston, J., Gaddy, J., Sumner, L., Posever, J., Choromanski, T., . . . Helmick, C. (2014). Prevalence and incidence of systemic lupus erythematosus in a population‐based registry of American Indian and Alaska Native People, 2007–2009. Arthritis & Rheumatology, 66(9), 2494-2502. doi: 10.1002/art.38720. PubMed PMID: 24891315.
Guest Author: Lupus Dude
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