Two roads - one straightforward, and the other long and winding. The straight path has a detour sign in front of it, forcing entry to the winding path.

A Family Thing: Coping with Lupus

It goes without saying, a lupus diagnosis will undoubtedly lead to a lifestyle change. While we know that this is “part of the deal” with lupus, lifestyle changes come into our lives for a multitude of reasons.

Relocation, for example, may require that you take a different route to work, which could require a change in your morning schedule. Your commute may be a bit longer which means you may have to budget more for gas or transportation.

The point is, there is any number of things that can require your lifestyle to change, just like with lupus – but that does not mean that it will be impossible to navigate and adapt to these adjustments. While I am not the one who was diagnosed with lupus, the lifestyle changes that occurred for my mother, also required a level of understanding, support, and adjustments from the family.

Family adjustments to life with lupus

One thing that I had to learn was that my mother would always have to take many different factors into consideration in her everyday life, that I otherwise may have taken for granted. Lupus would invariably affect her finances, her work, social activities, and many other areas.

Growing up, I was always involved in sports. I ran track, played football, basketball, dabbled with tennis, and even baseball. (Baseball was not one of my favorites – I had a difficult time hitting the ball; unfortunately, that was an important aspect of the sport.) But, the point is, I played many sports that required us to be outside. This really became a problem for my mom after her lupus diagnosis.

I was fortunate enough to have my mom attend all of my sporting activities while I was in elementary school. But, after her diagnosis, things changed. I would not think twice about spending a day outside…we lived in “Sunny South Florida”. But our residence was like a contraindicated prescription. She had to strategically weigh her decision to spend any extended amount of time outside. Would it be worth the achy joints and indescribable fatigue that would follow the next day?

"My mom would truly do the best she could."

As we (my siblings and I) got older, I assumed more responsibility when it came to some of my siblings' outdoor sporting events, practices, track meets, and lacrosse games. My mom would truly do the best she could, though. It was interesting, the more that I learned about the impact that the sun has on people with lupus, the more I appreciated every outdoor event that my mom WOULD attend. There were times that I set school records and won county-wide notoriety because I knew that my mom was risking excruciating pain later, or the inability to get out of bed in the morning to watch me.

Again I say, these were things that I truly took for granted. She had to consider how she would feel later before she committed to doing anything. Not only would this impact her, but it would also undoubtedly impact the family as well.

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