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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Comments

  1. I am so sorry you are going through this! Thank you very much for sharing this part of your life with us.

    I have Chronic Fatique syndrome; and even though that is no comparision to what you are going through; I do understand a little. I have flair ups that will knock me out of comission for months at a time, and I have heard every one one of those comments.

    I hope you are having a good day! Remember to just take it one day at a time!

  2. Ugh. So sorry you have to deal with this. I’m a nurse, so I understand (medically) a little of what you have to go through w/Lupus. I’ll just never stop being amazed at the things people say. If people have said all of these things to you, I’m sorry. I think posts like this one, help, though. They help educate the numb nuts who make these kinds of remarks. I hope many of them stop by and learn something. Hope you’re having a good day today.

  3. oops…just re-read your intro…people HAVE said all of these things. Great. Hang in there.

  4. My mom has Lupus — she was diagnosed when they still weren’t really sure what the heck lupus really was. I remember her heading to a doctor, having the doctor look at her, say “but you don’t look sick,” watching my mom break down crying, then the doctor leaving the room, come back in, saying “let’s start over,” and working from there.

    *hugs*

    That’s all that I have.

    • Your poor mom!! I have had many friends break down over that same comment. I’ve cried over the “We don’t know what to do with you anymore” comment. When your illness is invisible then it can be so hard to explain!

      How’s your mom now?

  5. Sara, So sorry for what you are enduring. My Mom has lupus and she has had the same comments. Especially “You look so good”. I know first-hand how debilitating it can be. She is “stable” at the moment, but cannot do an activity on 2 consecutive days. You are right, we just have to keep educating people. Sending you a hug <3

  6. While I don’t have Lupus and I’m not a mom, I feel as if I can relate. I have chronic Lyme disease and I’ve heard a lot of these as well. I’ve also heard (1) that medicine is of the devil (this just made me laugh) and (2) that I must be living in sin, because of course that’s the only reason for people to have a disease [eye roll].

    I try to take it well because I know they mean well, but sometimes it makes it very hard to be around a person. Of course if the person is telling me that my treatment is of the devil or that I must be more sinful than them and most people because I have a disease then I avoid them.

  7. My daughter has was diagnosed with Lupus 10 years ago. She is also starting on Cytoxan as a last hope to give her a little bit of a normal life. Unfortunately so many people are ignorant to the horrible effects that lupus can take on someones life!!! There is not enough awareness and I have to admit that I was one of those people years ago!! Every person with Lupus needs an advocate because Dealing with Drs has also been a nightmare through the years!!! I have had to fight for her when she wasn’t strong enough to do it so many times and if any dr EVER tries to send a psychiatrist in to see her again they will be thrown out of her room!!! They don’t all listen!!! If you are not comfortable with a dr move on and don’t worry about hurting anyones feelings!!! People just don’t realize the horrible disease that Lupus is. It not only affects the Lupus patient but their extended family as well!! It takes a toll on the life of their children and spouse as well!!! There needs to be more support!! The worst is probably hearing how great you look!!! I was at the mall with my daughter and we ran into several people who told her how great she looked!!! She left the mall in a rescue squad!!! It happens that quick!!! I could go on and on but to the person who posted these 10 things not to say KUDO’s to you!!!! Well said!!! Thanks for listening!!!

    • I am so sorry that your daughter has had to experience these things! It’s a wonderful wonderful wonderful(yes I said it three times and would say it more!) that you are there to support her and be her advocate. Here’s to hoping that Cytoxan will help her! Send her my way (or my FB page) if she ever needs to talk. xoxo

  8. I think most of the time people say things thinking they’re being supportive, as if you’re not already as educated as anyone can be on your disease and your body. But it’s certainly annoying to hear the same wrong things over and over (and not to be that person, but my father-in-law had lupus, so I do understand a little bit). Thanks for sharing!

    • I hope your father-in-law is doing ok. It’s important for more people to understand and just listen. We don’t fault people who say the wrong things, but sometimes we get a bit frustrated. Thanks for stopping by!

  9. I wouldn’t have thought telling someone they look great would be a bad thing. I would be saying it so my friend knows that even if she feels horrible, she still looks beautiful. A few of these I think are coming from a nice place but sometimes people don’t know how to say things. I would never tell someone they would feel better if they did xyz, but I would ask if they have tried a better diet because diet can be so linked in to health. But Some of these are crazy and I’m sorry someone said them to you. #SITSBlogging

    • Yes, most things are said out of a place of compassion and trying to understand. Unfortunately it makes people who aren’t feeling well feel like they’re not understood or that people believe that they aren’t doing everything that they can to be better. Again, we know it’s not said out of being insensitive…it just sometimes makes people feel isolated.

  10. I’m always amazed at how insensitive people can be. Perhaps instead of saying anything, they can just love on you. Autoimmune diseases are often hidden to others. I really like your suggestions.

  11. Thank you for sharing your experiences with us. People mean well, but sometimes say really stupid things. I have a co-worker who has lupus. Before she was diagnosed her doctor kept telling her there was nothing wrong with her and she needed to see a psychiatrist. She attended a lecture on chronic fatigue syndrome thinking that could be her problem. Afterwards she went up and talked to the presenter about her symptoms. He said it sounds like you have lupus. Even the medical community aren’t trained properly about lupus.

    • Very true! It’s something where people are still learning about the mysterious disease! So frustrating and why we need more research funding!

  12. Thanks for sharing your experience. Spreading awareness, I hope, will lend to an increased sensitivity among people who make careless comments to people who maybe afflicted with lupus or any chronic ailment.

  13. Thank you for educating us, this is the first time I know of someone who has this. Spreading awareness on this is really important. Thanks again!

  14. This is spot on! As a mom with an autoimmune disorder I commend you for the bravery of this post! THANK YOU!

  15. Thank you so much for writing and sharing it this with the world. It’s gives me hope and comfort to know that I’m not in this alone. I’m a mom and I’ve heard every one of those comments said to me by family, friends, co-workers, physicians and all. It’s been so many times I’ve just wanted to respond but I don’t even have the energy to rebut the ignorant comments. One comment that gets me the most is ” you just need to pray about it or pray more” to me it’s one if the most hurtful comments I’ve faced. I was born and raised in a religious family and prayer is a daily constant and natural thing for me so for someone to make a comment like that to me as if I haven’t prayed enough just really disappoints me. I just feel like it’s saying your not good enough for God or something. Anyway, my point was to say I totally understand, agree and appreciate you writing this. Thanks

  16. Elizabeth Jenny says:

    I was recently diagnosed last March, I worked sick for 3 years, numerous expensive tests, ignorant Dr.’s and now if that hasn’t been enough and dealing with the disease and learning about it, dealing with side effects of meds, I am now having to fight for my long term disability benefits through my job! I was approved for 6 months of short term disability and the “medical team” that reviewed my case for long term denied me. I have a daughter in college and another one still at home that I need to finish raising. I have worked all my life for 35 years, now at the age of 50, I can no longer physically work. I see a rheumatologist and hematologist as it has given me immunothrombocytopenia, low platelet count, I bleed totally out of the blue, no warning, from different places, bleed under my skin. I run fever and have pain, malaise on a daily basis and now I have the stress of having to appeal their “medical team” decision. I still have to pay the Dr.’s, pay for labwork, buy my medicines, etc. and my income was counted on to pay bills monthly. Why does it have to fall on us to educate people who are supposed to or at least should be educated as they are making life changing decisions for people. I am disgusted and overwhelmed with it all. Thank you for your post, it helps to know I am truly not alone, I feel like directing these people to these sites and tell them to educate themselves a little more!! Love and light to you and your family!

  17. Sarah Sutton says:

    I have lupus as well and I feel exactly like a self mutilating pirhana. Couldn’t have said it better. I hate lupus and I hate what it does to our bodies.

  18. I am so sorry for what you are going through, I can’t really imagine. I do however have lupus as well, and I’m a new mommy, its all very new and I really like seeing things like this, bacause it reminds me I’m not alone.they first diagnosed me just before my 16th birthday, I never had anyone that understood. Thank you for sharing your story :)

  19. This is such a well-written post, and eye-opening – Thank you. Just shared it over at IBC. I think a lot of the insensitive commentary comes not only from lack of knowledge, but also the fact that we feel like we need to say *something*, when we’d be best served by simply listening. Thank you for being willing to share what it looks like behind the smile. xo

    • Thank you!! I’m hoping I’ve finally found my purpose in helping people realize that sometimes…support is all we need. :) xoxo

  20. I love this!

  21. Jennifer Petrilla says:

    Hello! I have lupus also and about 8 years ago I had to do the chemo cytoxin because my kidneys were failing. They told me that if I did this chemo it would take away my ovaries and I would never be able to have kids. I was very upset about this and told my mom that I would freeze my eggs. Then I decided against that. I was only 21 @ the time and had yet to meet my Prince Charming. So I decided that if I could not have kids I would adopt when the time was right. I went on w/ the chemo for seven months. Lost all of my hair and felt week. After seven months my kidneys were back to normal:) two months later I met my prince!! We ended up getting married two years later and guess what…we were able to have a son! Keep your head up and never give up!!

  22. Jaime Herrera says:

    Thank you. Just thank you. While reading this I have tears runing down my face. You reminded me that I am not alone. While my lupus is not at your level, I feel you. I am newly diagnosed but have been sick for while. I have had someone say (multiple times) each one of those things. I just don’t argue and give a serious face or smile while nodding and change the subject. I down play a lot too. Why bring everyone (ie my hubby, mom or children)down with me? They know I fighting everyday that’s enough for me. So once again thank you.

    • :hug: I’m so glad you found me and that we now have each other!!! If you ever need to talk let me know!! xoxoxo

  23. I was so happy to have come across your blog! I am very sorry you are experiencing the many “joys” of Lupus, while trying to raise your boys, take care of yourself and maintain some semblance of normalcy. I have been living with Lupus since I was 14, I am now 37. I had two very difficult and dangerous pregnancies but now have two lovely and healthy young girls. 23 years after being diagnosed, one kidney transplant, lung biopsy and numerous surgeries later, I refuse to give up. Even on the days when my body says, “just give up, you’ve been through enough, stop fighting.” Even on those days, I still get up and slap on a little mascara and a little lipgloss and face the world. Sometimes my body has other plans and makes me pay for that one indulgence by not letting me get out of bed for the next 4 days. But when you live with Lupus, every moment is precious and you take what you can get. I’ve been told every single comment you mentioned in your blog in some form or another. Whether from friends, family, insurance administrators, even my own doctors! So many people still don’t understand how devastating Lupus really is. So I’ve come to the conclusion that all you can do is try to educate people, surround yourself with others who understand your struggles and it probably wouldn’t hurt to learn some self-restraint, at least in my case. Thank you once again for sharing your story. I admire your strength and applaud your courage. Know that you have someone else here who understands what you’re going through. One day at a time:) xoxo

    • Thank you! <3 It’s great to meet others that have had similar experiences, but so sad at the same time! I’m sorry you’ve had to go through this!

  24. If I could reach through my FB page & high five you, I totally would! Nail on head, girl! Amen!!!

  25. Sarah I’m so sorry you have to go through this horrible disease, I am 25 years old and was just diagnosed with lupus in May and it’s attacking my lungs. I have no insurance and I’m scared and don’t know what else to do, obviously your situation is much worse than mine, what do you do to cope? Every night I can’t sleep because of my prednisone and then when I have to get up with my 1 year old i fall asleep on the couch and thank god I have nothing he can get into because I wouldn’t be able to move fast enough. I’m also a full time online college student and Hair stylist that works 4 hours a day tues-Sat, I’m scared that all of this will end abruptly and I won’t be able to do any thing, how do I cope with this?

  26. SORRY I MEANT TO SAY Farah NOT Sarah I’m so sorry you have to go through this horrible disease, I am 25 years old and was just diagnosed with lupus in May and it’s attacking my lungs. I have no insurance and I’m scared and don’t know what else to do, obviously your situation is much worse than mine, what do you do to cope? Every night I can’t sleep because of my prednisone and then when I have to get up with my 1 year old i fall asleep on the couch and thank god I have nothing he can get into because I wouldn’t be able to move fast enough. I’m also a full time online college student and Hair stylist that works 4 hours a day tues-Sat, I’m scared that all of this will end abruptly and I won’t be able to do any thing, how do I cope with this?

  27. Ronnie Coursey says:

    Just a message from the silent husband of who has to be your twin (possibly evil). My wife of 15 years and nearly 10 years of diagnosis is a forced stay-at-home mom and as “Tonka tough” as they come. Oh she’s also sarcastic and funny in the best ways possible. She’s heard all ten and a few more like, “Did you really sleep until noon?” And “Your husband is so good looking and awesome.”

    Ok ok, I made that last one up as hard as it is to believe. The medical solution to Lupus doesn’t exsist yet. Do the best you can with what you have. If you need rest, then rest. If you hurt, don’t skimp on your meds. If you are willing to try homeopathic stuff, then try it. But the best thing you can do is share the knowledge of autoimmune issues, lean on your network, and surround yourself with those who love you.

    R-

    • Thank you so much for reaching out to me, Ronnie! You are spot on about doing your best and reaching out to your network. Not everyone will understand, but those that do can help you truck through!

  28. Awesome stuff!
    I have SLE, RA, Reynauds, DVT’s, etc. and live this daily.
    My favorite point of yours was the ‘tough it out’ one.
    I usually tell the people who ask me about pain that “My pain tolerance level is much higher than 10 and you wouldn’t be able to handle it.”
    Thank you for posting this,

    Kirk

  29. Thanks for sharing your story and your strenght. One of the comments that hurt me is when I step back from something (can be a party or a school event etc.), sometimes last minute, because I suddenly feel drained or in intolerable pain, and some people say (sometimes in my back) that I am making up excuses, or that I am not reliable, or that I ‘hide behind my disease to avoid things’. This is not nice particularly when coming from people to whom I have spoken clearly and explained in detail my situation. At the same time I don’t like to give up everything upfront, or not to be included in anything, due to the probability that I might have to step back later no matter how I care or how involved I am. This was always the case since I was diagnosed 22 years ago and is even more important now that it impacts my little daughter through me. But I am much better lately because with the help of my husband I have been able to create at last a network of understanding friends who know how to be flexible, adapt and plan with us. I do wish you all my best.

  30. Alex Derjaha says:

    While no I’m not a mother (I hope I will be one day) I have had people say all of these things to me, and I can get really worked up about it.
    when I have friends complaining about having a small cold or some minor stomach cramps as they whine so much and I just want to yell at them to stop as I have to suffer every day in so much pain and being sick all the time.
    I can’t even have a decent relationship as people think I’m making excuses to not see them.
    I was diagnosed with S.L.E. on the 21/09/2012 on my 19th birthday, since then I’ve had to go on work cover 3 times because of an injury I’ve received at work that shouldn’t have been as bad as it was but as my body is really frail it happens, my boss wants to fire me because of this which I’m really upset with as I love my job.

  31. I am a nurse, a mother and I have lupus (15 years) and if I had a penny for everytime Ive heard these things I would be a millionaire. Its a horrible disease and I have once came near death 4 years ago so I hate when people say you dont look sick or you dont look like your in pain….it makes me extremely angry! I think doctors and the public need more education about lupus before they judge us!

  32. Brittany says:

    Just found your blog. Thank you for this! I’m a lupus mama with two little boys- I’ve heard every single one!

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