I almost wish I had cancer instead of Lupus.
It’s one of the many reasons my family is going to Washington DC in June. Because unlike Angelina Jolie I can’t make a brave decision (which I applaud wholeheartedly) and then simply have only scars and memories left to show my children.
I know it’s a terrible thing to say…to wish I had a disease that kills the people I love and that kills so many. But it also can be defeated. It can be prevented. It has billions in research and deserves billions more. And yes, there is a sick part of me that wishes I had to fight cancer and were given that fighting chance so I could kick its ass and then move on with my life, or lose my battle with dignity.
Instead I have a chronic illness. Like cancer it has no cure. Unlike cancer, it can not be defeated…it can only be ‘controlled.’
1.5 million Americans suffers as I do…and those are just the ones who are diagnosed. Because Lupus affects a majority of women of color there is tremendous fear that many go undiagnosed and go without medication to help them function.
Without the pills and shots I take daily, and the infusions I get bi-weekly, there is no way I could function. So in a way, you can add ‘double mastectomy’ to the list of things on my Angelina Jolie jealousy list. What I wouldn’t give to go through several surgeries to be rid of this fear and pain and ache and disorder. I’m jealous I had no choice in losing my colon, gall bladder, ovaries, uterus, cervix, or in the stroke I had thanks to Lupus. I’m jealous I can’t just have a surgery and a few rounds of chemo and radiation instead of my bi-weekly rounds and the constant fear of another organ in danger just around the corner.
I know it’s not fair to compare diseases. Or to play the ‘who has it worse’ game. I know, compared to so many, I would lose hands down. But I can’t help wishing I could knock the crap out of the ‘chronic’ part of auto-immune disorders and fight a brave fight and then move ON. Just let me win or lose already. Just let there be a finish line.
Lawmakers need to know Lupus isn’t like many of the illnesses people lobby for when they come to the Hill. Sure, we need research money like any other. However, what I want Congress and the Administration to know is our fight never ends. The children always are in fear of when Mommy will go back to the hospital. The story Angelina Jolie told of her partner, Brad Pitt, being by her side and there even being jokes…believe me, after hospital stay #50000000 you are lucky if your hand is held between arrangements being made on who will take the kids to school and what can be made for dinner between doses of hard-core drugs from the nurse.
Marriages have crumbled under the strain of Lupus. Children require therapy because they have to learn to incorporate ‘Mom is always sick’ into their everyday lives. So much so that I hesitate to turn on the news tomorrow morning, knowing Ms. Jolie will be on every station here in Los Angeles and it will inevitably lead to my kids asking ‘can’t they just cut the Lupus out of you, Mom?’
And I will have to hide in the shower, again, to cry. And I will explain, again, that no… no… they can’t just get rid of Mom’s Lupus but they can keep it under control and no, no, it can’t just be cut out, but maybe someday they will come up with a drug or a vaccine or even a cure.
If we are lucky, they will come up with a cure for Lupus and cancer, then maybe no more children will have to ask their Mommies about scars and partners will always laugh while we patients can finally rest, knowing the fight is over.
I think that is the sort of Hollywood happy ending we can all get behind.
Friday is Put on Purple for Lupus Day. Do me a favor and wear purple. And thank you to everyone who donated to help get us to DC. I’m happy to report we’ve purchased our plane tickets. We will do all we can to represent you proudly.
“Just let me win or lose already. Just let there be a finish line.” Boy doesn’t that ring true. I burst into tears over the weekend when I asked my daughter if she’d be too disappointed that I couldn’t make it to a school picnic after all, but that her Dad would take her. She looked at me and said “it’s okay Mom, I’m used to it.”
I don’t want her “used to it” — I don’t want *me* “used to it.” I keep fighting, but I know how much I’ve lost even in the past 5 years.
I read you on this post. Not that I’d want cancer either – but boy, wouldn’t it be nice to think that someday this might all be “fixed”?
I had no idea Lupus was that devastating. Thanks for your honesty and candor Erin. Yea, I’ll be wearing purple on Friday.
🙁
There are so many cures that I hope to see in our lifetimes…especially chronic ones.
I can completely relate and I’m so sorry Erin. I too have wished for cancer, as vile as it sounds to others. I meant it. This past year my husband went through cancer and luckily, he is healthy again. My son does not understand why I can’t “just take daddy’s medicine” and get better. The fact that he is constantly faced with MY illness is the toughest of all my pills to swallow. Much love mama.
After a visit to the neurosurgeon to schedule another surgery for my hubby whose Lupus has caused the issue, I get your frustration. If I hear one more time how odd it is that this disease has happened to him and how bizarre it is regarding the places are that are damaged from it, I might scream. Yes, we get it. It’s unusual for a young, white dude. JUST FIX IT! Or write a paper, or study it at the university in town. Whatever. It’s been years of the same conversations over and over with different types of doctors. Every month, every surgery. I’m not sure how he puts up with never a great answer, never a cure, never being without pain. But, he plugs along, very rarely complains. I wish there was a finish line, too. I wish I could find that cure, I wish I had unlimited funds to find help for you both so every day so you’d feel better upon waking. I’d run around the world to make it happen. And, trust me, I don’t run anywhere, but I’d do it if it would help. Good luck in DC, thank you for representing all of us!
I totally understand what you mean. Chronic illness sucks. I hope they do find a cure for Lupus for you and everyone else who suffers with it.
One day they will find a cure for it, my friend.
It’s not even close to the same thing, but I remember being wheelchair-bound and in and out of hospitals for years with RA until they finally found a drug that worked. The injections cost more than a car but I’m so damn lucky that I have them, as opposed to family members who died broken because of this auto-immune bs. I hope and pray that one day soon they’ll find a cure that helps you and I selfishly hope for myself that my drugs keep working. There is hope. I know that doesn’t sound like much when you’re suffering, but it’s there.
Remember when Anne Romney claimed she would rather have cancer than MS and there was a huge uproar? I’m no Romney fan but I understood where she was coming from – I don’t have an autoimmune disease but my husband does and the not knowing from day to week to month is incredibly difficult. I’m gonna put on my purple dress and send thoughts your way today!
I do not remember Mrs. Romney saying that…I do remember a lot of her thoughts on MS and was upset by them. Mainly because she has/had access to so many things so many people like us do not, and she couldn’t seem to understand that. I wrote a post about her discussion about MS because I was so angry – http://queenofspainblog.com/2012/06/01/ann-mitt-romneys-soul-mate-love-we-can-handle-chronic-illness-just-like-you-or-not/