Recently, a friend of mine shared how she feels about being a lupus survivor, and her words struck me in a big way.Read More
While using simple language, she was able to clearly describe what it feels like to have an autoimmune disease, as well as how the world sees it differently than her.
My goal with this blog is not to share daily challenges or facts about lupus, but I have noticed that as a condition, lupus is still yet to be fully understood by the community as well as the ones who care about me the most.
Mirror Mirror on the Wall
So, what is lupus again? How many times have you heard this question?
For me, it’s like having different images of myself. One that is who I am inside, my inner strength, and the other is what my body can accomplish. It can feel like a professional pianist (which I am not), playing in a broken instrument, so the sound that comes out is awful. It’s having to acknowledge and accept my limitations when I have always been a high achiever. Frustrating.
People from the outside see who you are in a different way, as well. They may make disrespectful or non-sense comments, family members who love you don’t understand either. Work colleagues think you are making a big deal out of nothing. I even had a Rheumatologist Ph.D. who invalidated and questioned my previous lupus diagnose. Shameful.
I have questioned my own judgment and feelings many times, wondering if what I am going through is really real. It is hard to believe in what I feel when my challenges are easily dismissed, due to people’s limited knowledge about lupus.
Education Is a Change Agent. It Starts With Us
Raising awareness about autoimmune diseases is a must, and everyone has a key role to play.
People need to know that being down with lupus is not a cold or the flu. It’s not contagious, it won’t improve, it won’t go away, a nap won’t help, there is no magical treatment, and it does not have a cure yet.
Lupus patients take medicine to lower the immunity, while everyone else takes supplements and vaccines to strength it. One day we are up, others we are down. We never know. Life is harder to be planned, and long-term commitments are challenging.
This uncertainty increases my anxiety, and so does my stress level.
Suddenly I am caught in a vicious cycle. I get stressed because I cannot control my symptoms, and I cannot control the symptoms when I am stressed! Ugh!
Having an autoimmune identity is complicated, and different for each one of us. One way to solve this challenge is to empower people to learn more about lupus.
Lead the Change
Don’t position yourself as a victim. We are what we believe.
There are lots of resources available about lupus: tons of Facebook pages, fact blogs, resource websites, books, but word of mouth and social media can help spread the information faster, and help others.
I have seen several opportunities to be more engaged in an awareness effort:
- Joining local fundraisings events to support the research for a cure. There are lots of options posted on the web, and Facebook
- Spreading the word, talk about Lupus with your family, friends, politicians. Learn more about it and share it. Don’t be embarrassed. It is not a happy topic, but it is real
- Volunteering in a local non-profit, join a support group to share your story. Being diagnosed is very hard, and by sharing your experience you can make a difference to others
Hang in there. We are together on this.