It's Scary to Tell People About My Lupus Journey
Last updated: March 2023
You don’t look sick. Sigh, this is one of the hardest things to hear. Am I alone in getting mad every time I hear those words? As I fight for the rights to my life daily with lupus, that one statement can send me to a straight negative attitude. There is no sick look and I have found myself trying to hide when I am sick and having lupus in general because of people’s poor choice of words and judgment.
The look of lupus
For some people, lupus is a mild disease that can be managed with medication and lifestyle changes. However, for others, lupus can be a debilitating disease that significantly impacts their quality of life.
Sometimes lupus is seen in its full form. You may see the rashes or lesions on the person. Other times it may not be seen. Many have emotional and internal organ issues. All of the time lupus is real and still not very well understood. Because of this, many people with lupus may hide their symptoms. I know I have and still do at times.
Many people with lupus choose to hide their symptoms from family, friends, and coworkers. This can be a difficult decision, because lupus is so unpredictable, and flare-ups can happen at any time. However, there may be several reasons why those of us with lupus may choose to keep our diagnosis hidden.
Some reasons one may hide symptoms
I have realized that lupus can be a very stigmatizing disease.
I’ve often felt like I was being judged or misunderstood by others. Additionally, since many people are not familiar with lupus and its symptoms, it can make it difficult to explain what lupus can put a person through daily.
Let’s face it, lupus is very unpredictable.
Flare-ups can occur at any time, and symptoms can vary in intensity. This always makes it difficult to make plans with family and friends, as you never know when a flare-up will occur.
Honestly, lupus is quite exhausting.
Too often we are dealing with feeling fatigue on a daily basis. This fatigue makes it difficult to work or participate in activities that we really enjoy.
Lupus can bring on a great deal of pain.
This pain can make it difficult to do everyday activities, such as showering, dressing, and cooking. It can be so embarrassing having to ask for help with basic activities.
Lupus can be a very isolating disease.
Sometimes I feel like am the only one dealing with this horrible disease. This isolation can definitely be magnified as we hide our lupus diagnosis from others.
Revealing your lupus diagnosis
If you are hiding your lupus diagnosis from others, there are several things that I have learned to do to make the process of revealing lupus a little easier.
Be honest with yourself
One of the hardest things for me to do was to be honest with myself. It was important to be honest about why I was choosing to hide my lupus. Was I choosing not to reveal this part of me in fear of judgment or embarrassment? This self-reflection helped me become more honest with myself and helped me determine if I should share what was going on with others.
Develop a support system
It is so important for me to have a support system in place. This support system includes close friends and family members who I talk to about lupus. Additionally, I decided to create a support group to talk with other people with lupus. The groups have provided me and others with valuable information and support.
Prepare for questions
In order to be comfortable enough to share my diagnosis I had to be prepared for questions from others. I knew many people would be curious about my lupus and would want to know more about the disease. It was important for me to be prepared to answer these questions in a way that was respectful of my privacy.
Protect your privacy
Without giving too much personal information or gritty details, I had to remember that I have a right to privacy. I realized I did not have to share my lupus diagnosis with just anyone unless I felt comfortable in doing so. Afterall, everyone does not deserve to know that lupus exists in my life.
It can be difficult to reveal your lupus diagnosis to your family and friends. A lot of courage is needed especially if you fear judgment. It’s also hard to make the decision to reveal your diagnosis to your employer.
Tips for revealing a lupus diagnosis to an employer
Revealing a lupus diagnosis to an employer is an important step in protecting yourself and your rights as an employee. It is important to be honest and open with your employer about your condition and the potential impact it may have on your work. It is also important to be aware of your rights as an employee with a disability, such as the right to reasonable accommodations and protection from discrimination.
Revealing a lupus diagnosis to an employer can be a very intimidating process. Here are a few tips that helped me take steps to inform my employer when I was working:
I talked my doctor.
It was important to talk to my doctor to get the best understanding of lupus and the potential impact it may have on my work.
Prepared a list of accommodations I may need.
With my doctor’s help, I prepared a list of reasonable accommodations I may need in order to do your job. This gave my employer a better understanding of what I needed and helped ensure that I received the necessary accommodations.
Prepared for questions.
I had everything I needed to answer question about how lupus could potentially affect my workflow. Being honest and open about lupus and the accommodations I may need.
Aware of my rights.
I made sure to be aware of my rights as a person with a disability and to know what protections I was entitled to. This helped ensure that I would be treated fairly and that my rights were honored and respected.
A personal decision
Revealing a lupus diagnosis to family, friends and an employer can be a difficult scary process that sometimes has to happen. However, it is important to remember that you are not obligated to tell all of your friends and family about lupus. It is truly a personal decision to do so.
Although it’s a personal decision, it’s important to realize that employers are obligated to provide reasonable accommodations and that discrimination on the basis of a disability is illegal. By understanding the importance of revealing your lupus diagnosis to an employer, you can ensure that your rights are protected and that you receive the necessary accommodations needed as you walk on this lupus journey.
In conclusion, lupus is a condition that can be difficult to reveal due to its complex nature and the potential implications it may have on relationships and career. It’s so important for you to do what is most comfortable for you in revealing it all to others.
Have you had issues revealing your lupus diagnosis to friends, family or an employer? Let us know in the comments below.
How are you most likely to respond when someone offers you unsolicited advice about your lupus?