Ten Things Not to Say to a Mother with Lupus

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In case you didn’t know, I have lupus. I know. Shocking. In case you weren’t able to tell, I am also a stay at home mother to two very wonderful little boys. What I haven’t mentioned much on this blog, but more on my Facebook and Google+ pages, is that I’m currently undergoing Cytoxan IV chemotherapy infusions to try to stop my lupus from continuing to attack my Central Nervous System. If it doesn’t I am at risk for completely losing my vision, seizures, strokes, and more. Yay! As a result of the severity of my illness’ progression I’ve been coming to terms that I am a mother with lupus and contrary to what I used to believe about myself…I must learn to live with lupus. Not despite it. I’ve had to be a little bit more open about my disease and talk to more people about what I’m experiencing. (Although, I don’t think people believe me when I say I’m becoming a wolf.) With this type of openness about something that I feel weakness and guilt about also comes comments from people that, while unintentionally, are less than understanding about what I’m experiencing. I usually brush it off and inwardly roll my eyes. A simple smile and nod works to pacify them and move the conversation along.

So with that I present to you the top 10 things never to say a parent with lupus*:

  1. “But you look great!” 
    • Awesome. I’m so glad that my body doesn’t look it’s beating the shit out of itself on the outside too! I’m pretty sure I’d end up with a couple black eyes, a bloodied nose, and maybe a few unidentified bruises all over my body. But you know what, I am glad I just feel like a truck hit me instead. 775637c25b70c28e73bb5bdab70997ac
  2. “Oh, I get tired, too. It’s because of the kids.”
    •  Now I know that all parents get worn out by their children. I agree kids are exhausting, but I can guarantee you that the type of fatigue you have with with an autoimmune disease is similar to the exhaustion you would feel after running a marathon, completely uphill, through the snow, dodging grenades, with children on your back,  and jumping over trenches. All under four hours. Unless you know what it’s like to have to rest after taking a shower, you have no idea what type of fatigue a person with an autoimmune illness like lupus is facing. For now, I will work on training my children to do my housework. 57420963968820508_1ZR52rLQ_f
  3. “Why don’t you take a nap during the day since you’re home.”
    • Napping sounds like bliss. Heavenly, cloud praising, bliss. However, like most parents can understand, taking a nap while your kids are awake is similar to leaving a cat and a dog alone together with a ball of yarn. Disaster will ensue. I will be left to do more after said nap than had I not taken the nap in the first place. Not to mention, of course, that I have a list of things on my daily to-do list that need to get done because “my job” is to take care of home and child. There is no nap time for grown ups anymore. In fact, my three year old has decided they’re not for him anymore either! 6530040_9786767-plwfr2_b
  4. “At least it’s not cancer.” 
    • You are so right! I’m glad it’s not cancer. I would never wish cancer on anyone and  I cry when I find out someone has lupus. Both are devastating and deadly. I’m also realistic about what lupus is and does to my body. I’m on chemotherapy, just like a cancer patient. I’m out of options for treatments, just like a cancer patient. My body is killing itself, just like a cancer patient’s. Even when in remission it can come back oftentimes worse, just like cancer. Unlike cancer, I will have to take medications for the rest of my life to keep me alive and prevent my body from shutting down. We will never know what part of my body lupus will attack next. We will never know which flare will be the one that sends me to the glory days. Just like cancer, I will forever be faced with frailty of life and my mortality will be staring at me like a magnifying glass on a bug on a scalding hot day. But no, I’m glad it’s not cancer and again, I never ever want to face cancer. I pray for those that do have to suffer through that. I’m also realistic about what this disease can do and what my possible early death may mean to my children.20yearslider
  5. “Have you taken anything for it?” 
    • Wait, there’s medication? Lupus patients are no stranger to taking medication. I have so many prescription pill bottles my kids never ever tried to reach for them. “Oh those? Those are just Mommy’s ‘happy pills.’ Hey look! A plug outlet. Let’s go stick a coin in that!” In fact, my pharmacist knows me so well that I don’t have to say my name when I see her.  She even asks my husband about our kids when he picks up my prescriptions. Unfortunately, there has only been one medication made to treat lupus in over 50 years. Of course, I can’t take it because it hasn’t been tested on people with CNS lupus. Yay me! I have been on every other medication that is used to treat lupus and as the final last resort I am now doing Cytoxan (chemotherapy). Here’s to hoping! d8f3721653642f2f5e6dcbc7f6182a35
  6. “I have a friend whose mom died from lupus.”
    • I’m sorry for your friend and their family. I really am. And while I appreciate you trying to relate to me the only way you know how,  being reminded that I could die from lupus doesn’t really help. All it does is remind me (again) that my next flare may be “the flare” and that my mortality is staring directly at me.  36a6a2316896ec22e7f84a81164dfafb
  7. “I have a friend who has lupus. She’s just a little tired and works still.” 
    • Ok, first question…is she Lady Gaga because she doesn’t have lupus! Although, her aunt did! If she’s not Lady Gaga then she’s probably not telling you everything. It’s said that most patients downplay how they’re feeling so that their friends and loved ones don’t a) worry or b) get tired of the constant complaining. Fact is that on most days people with autoimmune diseases wake up with something hurting, not working, or difficult. Sometimes my brain is giving me the silent treatment and I can’t quite understand what you’re saying. So, your friend may be working and she may seem fine, but chances are…she’s just keeping silent. I just don’t have that luxury anymore. 5bc60b4b70acc1d25cfa898fa9d42f5f
  8. “You’re probably just depressed and lazy. Have you gone to see someone?”
    • If by someone you mean a doctor, then yes. If you mean therapist, then yes. Both of which come back with the same response. IT’S LUPUS. I tried to work through my lupus, but apparently it’s here for the count. So instead, my lupus and I negotiate with each other. Feed the kids and family OR clean the house….While being a parent would be so much more fun if I didn’t have to feed them, I am obligated to do so. So, sorry Kenmore our love date where I run you all over my floor and dance in my underwear with you while listening to music is going to have to be postponed. Man, lupus is really messing with my social life.
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  9. “Just tough it out.”
    • I’m Tonka Tough. I’ve given birth to two children through difficult pregnancies, have had two little boys use me as a jungle gym while recovering from a muscle biopsy, and I break my toes on a consistent basis (I have monkey toes and they get in the way). So yes, I’m tough. Most patients have a pain tolerance that is off the charts. Their internal strength is made with titanium. I tough it out all of the time. What you know about what we’re experiencing is only a fraction of what we’re enduring. So yes, we’re working through it. Yes, we’re not giving up. Yes, we’re doing our best. Toughing it out is our only option. We’re not lucky enough to do otherwise. b2d886ebc91dcc4e91541913897bf95b
  10. “If you went gluten free/exercised/vegetarian/vegan/raw diet I’m sure you’d feel better!” 
    • I’ve exercised. I’ve changed my diet. I actual do both consistently. I agree a healthy lifestyle is good for everyone and not just individuals with lupus. What I don’t believe is that it’s a cure for anything except Celiac Disease. What I do know is that when your body is a self-mutilating piranha no matter what you do or eat it’s still going to hate itself. It’s kerazy like that. So, I’ll keep my cookies, make my sandwiches, and enjoy my pasta. Then I’ll run the elliptical and burn off the calories. Thankyouverymuch.
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Have you ever had anyone say something like this to you when you were talking about your lupus? How do you deal with it?

*Disclaimer: If you have said any of these things to a mother with an autoimmune disease please know we know you don’t mean these words meanly. We also know that your words emphasize to us that what we are experiencing is truly not understood.

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