Lupus Guilt

It’s Wednesday so that means I’m going to Pour My Heart Out.

I feel guilty. Horribly guilty. I didn’t do anything wrong. No one is hurt except me.

But I feel guilty.

I have told only a few people (in fact, it’s a whopping 5 friends and Hubs) about what is going on with my health. I haven’t told my friends because it puts them in a hard spot. I haven’t told my parents, they’ll only worry. I haven’t told my sister because she doesn’t really get it. I’ve tried not to speak about it, because I just focus more on the “could be’s”. Sometimes, I talk about it because I’m scared, but I try not to because I will only get upset. I will cry. I will predict the worst. I won’t just grit my teeth and deal, which is my only coping mechanism that I am satisfied with doing.

I’m sick. My lupus is flaring and no one has a flippin’ idea what the heck is going on. My doctor teared up today because she can’t do anything for me until she knows what is causing the problem. She’s sending me to yet another specialist and with that will go more testing. And more testing. And more testing. I’m losing strength fast. Emotionally and physically. Holding my children is taking a toll and there’s only so much I can do that doesn’t require lugging around a three year old and an eleven month old.

I feel guilty because of the stress of the unknown this gives my husband. I feel guilty for my boys, who while they don’t know it now, have a sick mother. I know that they will see me go through more crap than any young child should see their parent enduring. I feel guilty that I can’t be “normal”. I feel guilty of the money it’s going to cost even though my husband has told me to stop thinking about it. I feel guilty for my doctor being sad and frustrated she can’t figure it out even though that’s her job. I feel guilty that my parents don’t know because I don’t want them to worry and having them worry would make me feel even more guilt.

So yes….I feel guilty.

I feel pain.

I feel exhausted.

I feel weak.

Because, the girl crying in the bathroom after her doctor’s appointment can’t be anything except that, right?

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  1. Oh lovie! I want you to know that it is NOT your fault that you are sick. But I also want to tell you that accepting your condition is the first step towards overcoming it.

    Tears are a part of life and more importantly a part of healing. Let them flow love, they are a testimony to your perseverance. You, a mother to children with a husband AND battling lupus. Phenomenal! You are in pain but you are still standing, fighting, living another day. That speaks volumes of your strength!

    I want you to know you aren’t alone, that you have sisters and brothers who are here and can help walk you through this.

    Acknowledging your illness is first. You will have to share it with the family, you WILL need their help to overcome lupus. You shouldn’t have to do it alone lovie, let them help you <3

  2. Oh, honey! Do not feel guilty. I do not have Lupus but I’ve lived with Crohn’s disease and Ulcerative colitis for almost 16 yrs., both are also auto-immune diseases. I have a friend who also has CD…due to the high levels of prednisone they put us on, she ended up with Lupus and now osteo-arthritis. What I’m saying is that although I can’t completely relate, I do understand how you are feeling. There are days when I can’t leave the bathroom. Days where leaving my bed is exhausting to even think about. And the guilt b/c the kids want to go outside to play or they want me to play the Wii. I wish there was something I could do for you. Accepting the Lupus is important. And, as strange as it will sound, telling your folks will help with the stress. Yes, they will feel the impact but they will be there to help you with your precious little boys. Especially on those days when you feel like you just can’t go on. Or, you just can’t get out of bed.

    Reducing stress is so crucial…I’m horrible at this one. Anyone that knows me can tell you I’ve always have too many irons in the fire. But then I think about the doctor bills and I continue to add more to it. I recently had to have a CT scan on my abdomen and pelvic area…did you know they charge you for two scans because it’s two areas? Ridiculous! Over $2500 for each! Ouch! But you know what? Your husband would rather pay for all of those bills than see you suffering. You’ve got to face this head-on for your kids, your hubby, folks and especially for you.

    You have my email if you need to vent more… :0) HUGS!!

  3. I send you ((hugs))…I can’t imagine what you are going through. It does sound like you have a wonderful husband and family that will support you!!

  4. Sending you prayers of support.

  5. This is my first time here and I wish I could give you a big hug right now. I don’t know first hand the pain you endure, but I know first hand the perspective of your precious babies. My mom had so many cross-over auto immune symptoms that the doctors never conclusively diagnosed her with any. They just listed all the ones she showed symptoms of. That’s all to say that she had pain all the time. And she felt guilty that she couldn’t be Super Mom. But what she didn’t know (and what I hope you hear now) is that she WAS Super Mom. She was Super Mom because her love for us was so big and we felt it Your babies will love and adore you because you are their mom. Whether or not you can carry them around or keep up everyday doesn’t matter.
    Please don’t ever feel guilty about this. The more support you have, the better. ((HUGS))

  6. I’m so sorry you’re suffering. I have fibromyalgia and have had those guilty days, too – especially when my kids were small.

  7. Hey girl…I’m so sorry. I wish there was something I could do to help. I wish you lived in my city…so I could help with anything, something! It’s ok to cry, hun. But I have no idea what it is like to carry the burdon that you have with such an unknown illness. I’m sure the guilt is overwhelming at times…mommys have a tendency to guilt ourselves all the time! Know you are loved and that there are friends or family that would help. I’m sure words are just words. I wish I could pour us a glass of wine and just hold your hand while you cried. I’ll say some prayers for you…God and I are tight. Love you hun!!!

  8. You amazing, strong, awesome, incredible woman, you!

    Not only are you going through this extremely difficult time, but you’re doing it while being a mother, and a blogger, and through it all the only thing I see is that you are concerned for and caring about everyone else rather than focusing entirely on yourself.

    That takes monumental compassion and love! Which also says a lot about you, because it takes a lot of energy to have so much love and compassion for others, especially while in the midst of so much suffering.

    For yourself, have you researched Dr. Richard Schulze at It’s a naturopathic website, but he has a lot of amazing programs that I think can help you. We used his products to get rid of my mother’s GERD and anemia, and it helped get my father off insulin shots and he can now control his diabetes purely through diet.

    It might help, and it’s at least worth a look if thee’s the possibility to stop your pain and suffering, yes?

    Take care, and best wishes!

  9. This is terrible news. I hope the new specialist can shed some light. I’ve joined to follow you.

  10. I’m so sorry to hear this! Hang in there! Sending you a hug.

    (Visiting from 31dbbb)

  11. I’m so sorry for you. I just clicked over to your blog for the first time…what a heart breaking post and stressful time for you and your family.
    Wishing you all the best…

  12. The last thing you need to feel is guilt. Guilt is a hard burden to bear and will not do anything to help the situation.
    Even though I don’t know you personally, you are in my prayers.
    Stopping by from SITS

  13. Oh no, sweetie! I am so sorry you are going through this. I think you do need to tell your parents. If I were them, I would want to know. You will be in my thoughts!

  14. Oh, wow, that is a lot to be dealing with all at once! It must be so hard but you should never feel guilty because you’re sick. Sounds like you have a very supportive husband who wouldn’t want you to be guilty. And above all, as hard as it is, try not to feel guilty about your children. It may be hard to see now but they’ll learn a lot from the experience. We all have to deal with our own realities.


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