Our research, education and advocacy programs in 2013 contributed advances that are helping to solve the cruel mystery of lupus.
Why it matters when celebrities go public about their lupus
by Lisa Walters
It really sucks that Selena Gomez has lupus. I know how hard a lupus diagnosis can be because not quite two years ago I received the diagnosis myself, at 26 years old. When Selena opened up about her illness not long after I was coming to terms with it myself, I recognized that having such a public face for my disease could be a good thing.
Oftentimes people really don’t pay attention to a disease, especially a confusing, often invisible one like lupus, unless there’s a big name attached to it. But I never could have imagined how big an impact she would have on me, my province, and a little charity with a big heart that I’m proud to be a part of.
At this point we all know that Selena Gomez has taken time off to focus on her health as she experiences anxiety, depression and panic attacks that stem from her lupus diagnosis.
At the end of the summer when she announced the cancellation of the remainder of her tour, her next stop was my hometown of St. John’s, Newfoundland, Canada.
Immediately following her announcement, social media in my area blew up with posts about Gomez and lupus, a lot of them very negative. There were comments like “she should just suck it up and get on with the show,” and people wondering why our radio stations hadn’t already blacklisted her music from radio play. There were hundreds of comments about how Selena had let our province down, that it’s not fair for us to have been looking forward to a concert all summer only to be disappointed. It was apparent that a lot of people really had no idea the struggle that someone with lupus has to face on a daily basis.
Seeing those comments was very upsetting to me, because I know what it’s like to try to function with such an unpredictable disease. When you have lupus, every single morning when you wake up you have no idea how the disease will affect you that day. You could have an amazing, symptom-free day, or your immune system may randomly start attacking a whole new part of your body that you weren’t expecting.
In the less than two years since I was officially diagnosed with lupus, I honestly couldn’t count how many times I’ve ended up in the emergency room or at my doctor’s office – sick, in pain and scared.
I have had panic attacks from the steroids they give me when the disease gets really bad. I have had a two-month period where a lupus flare-up manifested itself in the form of going into anaphylactic shock from a nut allergy I didn’t have just the week before. I ended up in the hospital ten times in two months and then the allergy vanished when my flare ended.
I’ve had muscle weakness so extreme that I couldn’t get up off my couch or get up the stairs to my bedroom. I’ve had half of my face become paralyzed. I’ve had trouble chewing and swallowing food.
I’ve had blinding migraines. I’ve had horrible joint and muscle pain. I’ve had a frozen shoulder. I’ve had countless infections just one after the other. And I have what most would consider a milder version of lupus. I haven’t had to undergo chemotherapy for my disease. Selena Gomez has. Of course having to deal with something like that can cause depression and anxiety. I would be shocked if anyone could come out of that without mental health issues.
"Because of one cancelled concert, the music and arts community in my area have banded together to spread lupus awareness, raise thousands of dollars towards research and education initiatives, and to help erase the stigma of mental illness."
I honestly couldn't imagine going on a whirlwind world tour to promote my new album with a disease like lupus. Every time I see someone successful with the disease I wonder how they manage. I'm beyond exhausted just from working a few hours here and there, or going for a walk to the store and back. Selena has been playing show after show and flying or driving across the globe to do it. Flying as far as Toronto and back is enough to do me in for two weeks.
So some people, not understanding the true depth of this illness, took to social media to berate Gomez for cancelling and disappointing them.
But luckily there were other people who knew the real monster that lupus was, and decided to take this unfortunate turn of events and use it to raise awareness.
It was clear that not enough people had the facts about lupus. A local musician, Jerry Stamp, who had to retire very early from his career due to psoriatic arthritis, took to Facebook and Twitter to explain the reality of an autoimmune condition and its impacts on a performer. His story made it across the country, and every read and re-tweet helped our cause.
Some bands from St. John’s were supposed to be performing in a battle of the bands the night before Gomez’s concert, vying for a spot to open for the pop star. They could have cancelled the event in light of the news that she wouldn’t be coming to Newfoundland. They had a lot more riding on this music festival than most people. Instead, a few of those bands (Lookalike, Rough Hands, and It Could Be Franky) decided that the show should go on, and that all proceeds should be donated to our local lupus charity, Lupus Newfoundland and Labrador (Lupus NL).
Suddenly Lupus NL was all over the news. Our president was contacted to do interviews explaining lupus to Newfoundlanders who knew little of the disease. We were asked why Selena Gomez would have symptoms of anxiety and depression and were able to shed some light on the huge impact that a disease like lupus can have on every aspect of a person’s life. People started recognizing us on social media and Newfoundlanders began reaching out to us to ask for help for loved ones with the disease. The Miss Teen Newfoundland and Labrador Pageant decided that in light of Selena Gomez’s diagnosis and the impact her show cancellation has had on our province, Lupus NL would be the official charity for their events for the next two years. In such a short amount of time we have raised thousands of dollars and have educated thousands of people who knew little of lupus before this.
Now when I tell people that I have lupus they say, “I know what that is, Selena Gomez has it.” That is a big step up from hearing “I have no clue what that is."
It’s awful that Selena is experiencing the mental and physical symptoms of lupus, and that she has to cope with a serious disease diagnosis at such a young age. I hope that she gets the help she needs and can get back to doing the things she loves in life.
As sad as this whole situation is for a talented young woman to experience, I hope that she knows that a lot of positive things came from her opening up so candidly about her struggles with lupus.
I am very proud of the people of Newfoundland who stepped up and put blame on the disease and not Selena for having it. Because of one cancelled concert, the music and arts community in my area have banded together to spread lupus awareness, raise thousands of dollars towards research and education initiatives, and to help erase the stigma of mental illness. This has had an immediate positive impact on me and others in my community who live with lupus.
Thanks, Selena. We’re thinking of you.
As 2013 comes to an end, Sandra C. Raymond, President and CEO, reflects on the advances Lupus Foundation of America has made over the years, and speaks about the key priorities for the future.