Last Friday, I was begrudgingly getting ready to go out with my sister and husband. I had had a rough day with my lupus. I had to deal with my family’s reaction when telling them about the severity of my most recent flare and about me going on Cytoxan, an IV chemotherapy treatment used for lupus. All that ran through my mind, as it has been for the last few months of this flare, was “I just want to lay down and never get up.”
But that’s not me. I don’t give up. I don’t let people see the weak side of me (although this year it’s been harder and harder to conceal the pain). I was determined because I am tired of being less than I believe I am. I’m tired of my body and mind in constant battle. I had to rally myself enough to, after a day of staying in bed, get up and glam up to go out because my husband and sister really wanted to go and I would not let them down. I soldiered on as I always soldier on, but I was exhausted and everything hurt. So when I received a text from a good friend of mine that said, “Just read that Selena Gomez has lupus,” I quickly went to Google only to find this.
If the reports and her lack of denials were any indication then the 21-year-old celebrity does have lupus.
Because that’s what you do when someone hurts and you can’t help them.
Because that’s what you do when someone gets a life sentence.
Because that’s what you do when you are ten years into a disease and see someone diagnosed around the same age you were.
Because that’s what you do when you feel like there is little hope for you and lupus is painfully weighing you down.
Except once I wiped my eyes, reapplied my concealer and mascara, fluffed my hair a little more I realized that she must be scared and me crying would do no good for her. I decided in that moment I would write an open letter to Selena as someone who understands the emotions that come with being diagnosed with a life-long chronic illness.
First, I have always been amazed at your ability to not fall into the typical “Disney Child Star” pathway of self-destruction. You’ve always seemed to keep your act together and your wits about you and I admire that in you. You are determined to have a successful career with integrity. Besides that little blip with Justin, you’re doing fantastic (j/k)! Keep it up!
I read recently that you have been diagnosed with lupus. You’ve had to cancel a tour and admit your body needs to rest. You’ve had to change things that you probably didn’t intend to change. You’ve probably had to keep your smile plastered, make up caked on, and rally through events as you hide your pain only to pay for it the next day. I’m sure you’ve felt like a semi-truck has hit you…only to back up over you again.
You probably feel weak and embarrassed because you’re scared. You don’t want to be seen as weak. You don’t want to be different in that way. You want to succeed. You want to be everything you can. You don’t want to be defeated by something you have absolutely no control over.
I understand. I’ve been there. So today I write you more as a big sister than a mother. I’m going to tell you what I’ve learned so that when you hit your 30s and you have children of your own you won’t end up like me.
- Accept your disease. It’s a part of who you are now. Don’t try to trick your body. Don’t try to make it do things it shouldn’t be doing. Don’t be victim to it either. It is what it is and you will live with lupus not as an enemy to it. This doesn’t mean you can’t cry or grieve for the life you feel you’ve lost, but don’t wallow in self-pity long. It does nothing, but make you weaker and a victim to your circumstances. Be a champion to your circumstances instead.
- Take your medicine. When I was first diagnosed I had a stage of denial and stopped taking my medication and dodged a couple of doctor’s appointments. I was lucky because my lupus didn’t hold too big a grudge and attack me ruthlessly. Instead, it nudged me into submission as a mama wolf does with her pups. I wasn’t so lucky the next time I went off my medications. As a result, I am now in a severe flare, about to receive the big guns of treatments, and regretting that I ever stopped my medications.
- You can have children. It may not be easy. You may struggle to get pregnant or stay pregnant, but you can succeed. Just make sure that you follow #1 and #2. Follow your doctors orders and listen to your body. Which brings me to my next point…
- Listen to your body. Only you know how you’re feeling. Only you know what feels off. Your blood work may scream you’re flaring when you feel fine, or that you’re fine when you feel awful. Listen to your body and treat it with kindness. Do what it tells you to and fight to get the treatment you need. Remember doctors don’t know everything. They don’t know what you don’t tell them. Only you can be an advocate for your health and to get the proper treatment. Don’t make the mistake I did and give up on doctors. That will only leave you flaring and incapacitated.
- Get plenty of sleep. I don’t care if this means not going out on the town or if it means sleeping until two in the afternoon. Sleep. It is the single best thing you can do for your body. It’s the number one message your body will scream to you so you can stop flaring.
- Don’t be embarrassed. During my decade of living with lupus, I’ve hidden my disease numerous times. I never told employers until I had no choice. I didn’t tell friends unless necessary. I didn’t want them to think I was anything less than everything. Except I wasn’t. With time I’ve been more open about it, but I still hide how it affects me. I’m trying to be more honest, but once again…I don’t want to be weak or seen that I can do less than others. I don’t want people to think my abilities are less because I’m sick.
- You are stronger than you believe. I have met many people with lupus in nearly eleven years. I’ve learned that almost always those that have lupus are strong women. Intelligent women. Determined women. Talented women. We are a breed of woman that when faced with crisis don’t cower and hide. No, instead we stand up tall (even if we are 5′ tall) and face life’s challenges head on. We protect those we love. We protect those at risk. We may hobble to our destination or sleep for days after the crisis is averted, but we will get there because we. are. strong.
- You have more power now than ever before. While I was a teacher I taught my students about lupus. I reached hundreds of students with accurate information about this disease. I raised awareness and funds. I tried to make as much difference as I could. You now have an opportunity to make a difference. You can bring awareness about the disease. You can clarify that Lady Gaga doesn’t have “borderline lupus” (there’s no such thing), but instead has a positive ANA like ten percent of the normal population. You can tell people that lupus affects over 1.5 million Americans, that only one medication has been developed specifically for lupus in 50 years, and that people are becoming disabled and still dying from this disease. You can finally tell people what House M.D. did not. “It IS lupus.”
- Who says… The lyrics to your song “Who Says” says it all:
Who says, who says you’re not perfect?
Who says you’re not worth it?
Who says you’re the only one that’s hurtin’?
Trust me, that’s the price of beauty.
Who says you’re not pretty?
Who says you’re not beautiful?
You are beautiful despite lupus.
You will succeed.
You will make a difference.
And in those moments when you want to cry you can. Just don’t give up on yourself.
I hope this helps.
Love from your lupus sister,