Explaining Lupus to Family
I was open and honest and suggested they ask me any questions they had. I did not want them to feel uncomfortable or see me as a fragile sick person.
My family was receptive and since sharing the initial information, I continue to offer updates through e-mail. I also started a blog, which allows my family — as well as others — to follow along with my journey without me needing to constantly update them with details.
Explaining Lupus to Friends
Similar to my immediate family, my closest friends were in the loop with my initial discovery. So many of them have been an important support system throughout this journey.
Because they were my closest friends, I did not worry about them seeing me as someone seeking pity. In fact, it was many of my friends who noticed so much of what was going on that they were the ones who initially encouraged me to go to the doctor to get it figured out! However, I have a wide network of friends and eventually I realized I needed to fill them in.
During the earlier stages, I was extremely hesitant to post anything on social media sites such as Facebook; however, I later discovered that this was an excellent format to share what I was going through. Facebook allows you to customize who sees your posts, which is something I utilize.
Furthermore, by joining various groups that have been established on Facebook and others areas of the internet (such as NewLifeOutlook!), I have access to a variety of people and a bank of resources that can offers tips for sharing information.
I invited friends to follow my blog and now embrace all of the social media sites for providing information without intruding on individual lives.
I didn’t want to make it all about me, so I shared it as ‘awareness’ and I left it them to choose to read if they were interested in learning more. By doing this, they have access to the information without me throwing it in their faces!
Have some avoided it? Certainly. But that is okay, as their knowledge and understanding is not essential to my wellbeing.
The most important factor is that I’m not hiding any information or being vague, secret, or cryptic in my posts, which really just annoys people!
Explaining Lupus to Colleagues
This one was a great worry for me, but I actually found it to be one of the easiest! In the earlier stages, I was worried about losing my job because I would often deplete my allocated sick days.
My doctors have provided me with valuable resources for knowing my rights. Lupus is protected under the Americans with Disabilities Act, depending on specific limitations. Additionally, I strongly encourage anyone with lupus to review the rules and regulations of the Family and Medical Leave Act (FMLA).
At the beginning of every school year, my primary lupus doctor would complete the necessary forms for intermittent leave under FMLA. By doing this, job protection and health insurance would remain intact, even if I should miss too many days as determined by my contract.
Develop an open line of communication with your immediate supervisor, administrator, or HR department. Remember, they are human and for the most part, they are accommodating and understanding (based on my personal experience).
Additionally, if you happen to be in school (I am currently pursuing my second master’s degree) and lupus is a disability for you, be sure to register with your school’s office of disability services. This will ensure that you receive necessary accommodations — such as extended time — to meet you deadlines without penalty. Virtually every campus, whether online or brick and mortar has this available.
Next page: explaining lupus to children.