Understanding the Unknown: What Lupus Means To Me

 

For those of us with Lupus, it is a very definite, consuming and frustrating disease. For those of you who love someone with Lupus, it too can be a very frustrating disease. And as hard as it is for you to try and understand what Lupus is and how it wreaks havoc on our lives, please also try and remember how those of us who LIVE IT must feel.

Please know, we don’t fault you for not knowing what we are going through. Even the medical community is at a loss, and they are the “experts.” We simply love you, for loving us.

What Lupus Means.

Living with Lupus and being the mommy of two beautiful boys means that the pain, fatigue, fear, and absolute frustration can’t control your life. Even when it is excruciatingly painful to help them put on their shoes; play hide-and-seek; or hug them – you are still mommy…and magic. Therefore, you are not able to say “not right now, mommy is sick and tired,” of being sick and tired.

It means that our family and friends will never understand what it’s like to have our bones, joints, and muscles hurt so bad that the weight of our own body on itself is pure misery. It means that nothing is ever “normal” or “simple” when it comes to an illness. Often times it isn’t even explainable, much less treatable. Headaches can last for weeks, a cough can turn into pneumonia in a matter of hours. The healthy bacteria that resides in your body can cause mouth ulcerations so painful that it leaves you speechless; and your muscles can become so inflamed that it causes permanent damage to your nerves.

It means that while people think you are just being lazy, you will never be able to make them fully realize that your body is spending ALL of its ENERGY attacking itself every moment of every day, so it has nothing left to give in order to do simple everyday things. Things such as wasting what precious fragile energy you do have trying to explain and defend yourself and your disease to another idiot who simply does not have the compassion or capabilities of ever understanding it.

It means that while the symptoms of Lupus can be vague.  However, there is nothing vague about the fear we live with EVERYDAY that today may be the day when our kidneys fail. Or when our brain swells. Or our eyesight deteriorates. Or when we can’t walk because our joints just won’t bend. Or when our heart beats its last. Sound morbid? Not to a lupus survivor. To us, it’s the sound of accepting our unforgiving disease.

It means that when your sons are sick and they need hugs and love from mommy in order to feel better, that is EXACTLY what you give them…with utter disregard for your own health. Then you put on your big girl britches and accept the consequences of these actions and getting sick yourself while not knowing how bad this time will be…or how many doctor visits/hospital stays/prescriptions it will take to regain your “health.” But you wouldn’t waste a single opportunity to lessen the hurt and pain of your sick child in their time of need because you damn well know that there may be a time when you are no longer around in order to be there for them.

It means that you will never be a shampoo model for Pantene – losing clumps of hair isn’t exactly “in” for this season! You can also forget about being a suntan model. In order to prevent a serious flare, you avoid the sun and become so pale that you make milk look tan. It means that sometimes you have to find the sick humor in being this sick because if you don’t, it will also begin to detioriate your very soul.

It means taking medications in order to “LIVE” with Lupus that are as equally toxic and devastating as the disease itself. You must really be desperate in order to willingly take medications whose warnings include: “may cause liver failure”; “may leave you susceptible to fatal, opportunistic infections”; “may cause irreparable eye damage.”

These pills aren’t even including our reliable arch nemesis, steroids. It means having to take these wicked little things in order to get the inflammation-of-the-month under control while knowing that they are causing such extreme bone loss that you wake up one morning with a broken ankle that requires reconstructive surgery. Let me repeat – You.Broke.It.By.Sleeping. And you continue to put these devastating pills into your mouth, voluntarily, because you know that if you don’t, you are putting something far more precious at risk. Your life.

But Lupus also means that you will be pushed to limits – mentally, physically,emotionally, and spiritually – that you never imagined are possible. And you continue to push these limits with your head held high and your middle finger held higher because you refuse to let Lupus win. You have Lupus; but Lupus does not have you.

It means that each moment that is pain or illness free is a victory. It means that you will learn to appreciate the small things in life in ways that healthy individuals can’t begin to comprehend. Such as being able to work all day, go home to play with your children, do housework, and still have enough energy to smile your adorably angry smile and tell Lupus that it can Kiss. Your. Ass. That, my friends, is a major victory.

Lupus. I am a Victor, not a Victim.

 

 

Article written by guest writer, Brandy Peacock

Brandy is Lupus survivor and advocate, cleverly disguised as a Beautiful Disaster from Edinburg, Texas. She is inspired by everyone who is silently battling their own illnesses – the “invisible” ones, the chronic ones, the incurable ones, the unknown ones, the misunderstood ones, and the terminal ones. She is most proud of her role as Mommy to her two young sons and hopes that one day they will also be able to call her “Hero.”

©2019butyoudontlooksick.com
  • Karen

    Hi Lisa, I owned my own business for 15 years and was diagnosed with lupus in 2010. We owned a restaurant and I ran the day to day operations. I thought I could keep up with the daily routine of running a busy fast food store, boy was I wrong.
    Unfortunately, we couldn’t afford to pay someone to run it for us and we were forced to sell, at a loss.
    What I am getting at is, I had to go on permanent disability in 2012. It has been life changing to say the least. I would recommend going on 100% if that is what your doctor recommends. It took me 4 years to get approved by social security.
    I don’t think it would take you as long especially since you are already half way there.
    If you keep pushing your body it will eventually push back. I’ve been there. Had days where I couldn’t even get out of bed but had to because no one else could be there.
    Listen to your body and mind. God bless.

  • Family Drake

    HI!

    I see that you made this entry 3 years ago. Strangely enough, I could have written the exact same comment from myself, today. I am about to let go of a highly specialized job of 11 years, which I love, which provides the insurance and main finances for our family….I have recently transitioned to 50% disability and know that I need to go to 100%. For 5 years, my doctors have been recommending this…I just cannot ‘push the button’ as you said. BUT, my family and children continue to be the ones who compromise…and that is what makes me push the button…I think…tomorrow.

    Please let me know how it has all worked out for you. I have found MANY blessings in my brain injury…I think I need to trust the LORD for this next blessing.
    🙂 Lisa

  • Marian Cunningham

    The lies I have to tell people when I am not well. I am constantly told how great I look
    And it’s all a fake. Then people tell me, we are so lucky we have good health and they
    Know I have lupus, but because I look well they forget it. I should be getting an Oscar
    For my acting. Most of he time I’m positvive though, Here n the UK they haven’t a
    Clue what lupus is; I got it at 20 and now I am in my mid fiftiies, no children, miscarriages, no sun, had breast cancer, with one breast removed, it as a doddle
    Because the lupus gave me a break

    I have the most wonderful husband, loving, kind and caring and I thank God for having
    Him in my life. I try not to moan but I listen to some people constantly wringing about
    Nothing and I pity them

  • bdubois78

    Thanks. I have 3 girls myself. It’s a very lonely place sometimes when no one understands. My liver is being affected but people think it’s no big deal.

  • Dad

    This letter is definately a source of knowledge and helps my understanding of the disease. My 29 year old daughter was recently diagnosed with Lupus. Although I have chronic artheritis, it is still hard to comprehend and be understanding of the many major concerns. Thanks again for information. My prayers are with our daughter and all people effected by Lupus.

  • crystal crenshaw

    thanks for this I have been awaiting my my appointment with the rheumatologist for 6 months my doctor says there is nothing that he can do for me anymore I have to wait to see rheumatologist….I have been so frustrated I just searched why lupus why me and your story came up….thanks again

  • Sandra Benavides Caballero

    You are a hero and your boys already know it! Thanks for sharing, I am still in the MCTD boat. I also have 2 young boys (2,4) and I live my life for them, despite the pain and aches. (And I spent 3 years in Edinburg, tough o stay out of the sun there!)

  • Dplunk

    So needed your words tonight, thank you!

  • Treasure O’campo

    this couldnt be more on point in describing this draining condition. i shared with family and friends so they get better understanding.

  • Mari

    Thank God someone somewhere understands, and can put it into words. Nobody but nobody understands what it’s like, the fear, the uncertainty, of living with lupus. Because I make an enormous effort every day to put makeup on and dress nicely, people think either I’m exaggerating my symptoms, or that there is nothing wrong with me.
    I wish everyone could read your article, including my husband!
    My GP asked me today if I was in pain ?? I replied I am always in pain, and frequently in agony.
    Thanks again, it’s just so good to hear from someone who understands.

    Mari

  • kookoo4peace

    OK, I am crying because I so understand.I’m in such a transition after having to quite a job of 12 years that I dearly loved. This really does say it all!! Since being off, I hoped to feel better very quickly, but in my mind I knew this was probably not realistic. Having younger kids, it just BREAKS MY HEART when I say I cant do something because I don’t feel well. I have three Dr’s . that want me to apply for disability, I have it all filled out, but just cant push the send button. Part of me does not want to really admit to myself this is really happening. But it is.

  • Yvonnedoeshair

    Right on the dot… ^_~* I’ve got 2 daughters, both of which are dancers. One dances about 12-15 hrs/wk, 9yrs old & the other, well she’s 14. That’s all I have to say… At first I thought that maybe, possibly there was something wrong with me. I’m so happy to have seen this. Thank you!!

  • Nicole

    This is FANTASTIC! BRAVO!

  • Jeannerhode

    thank you…. better words could not be said to explain this disease of ours

  • Hilary

    I love your article especially about putting on your big girl britches. I was diagnosed at 16 and was told by my mother who also has Lupus that I could lay in bed and hurt or get up and live my life and hurt but it was my choice. I chose to live my life. There are times I ignore my disease and it reminds me who is really in charge but I will not let it dictate my life and limit me from experiencing life with my beautiful children. I will not allow them to remember a mother who laid in bed all day.

  • What a great article, my friend Jennifer recommeded this site.
    I have Lupus, Fibromyalgia, degenerative Lumb Disc disease,
    and I am being tested for Shrogrens. And prior to going on disability, when I had to leave work everyone would say every day but you don’t look sick and it could really drive you crazy.
    I would leave work almost in tears, and have to drive home in such pain that I would not even remember driving home. And sleep for hours just trying to recover. and then of course wake up feelng just as bad if not worse. I got so I would not make any plans with my friends to get together, because more often than not I would have to cancel I have had to cancel medical appointments because I was unable to drive, or sometimes not take my medications because I needed to drive somewhere and
    then suffering for days trying to get enough of the meds ino my system so that I can function. I hate it when friends and family ask you why you have to sleep so much, thank God they don’t know because that means they have never been through this
    but I can’t stand people being so critical.

    Thanks for listening.

  • So true!

  • Patty

    Thank you! I’m going through an awful flare and this was such a pick-me-up!

  • Christina

    Thank you!
    (A chuckle and a tear.)

  • Oh, I forgot! Your writing about your sons having to have a flu shot because they live with you reminds me of a time recently when my three sisters and I, who only see each other twice a year were planning to meet. One of my sisters lovingly chose not to come because she had a bad cough. Should I have gotten the cough, my complications could have resulted in surgery at the best and coma or death at the worst. It was the first time that someone I love literally had to stay away in case I got sick or died. Every day brings awareness of another consequence.

  • Brandy, like other posts on this site, yours brought both tears and nods of the head – yes, yes, it’s like that. I don’t have lupus, but life-threatening complications of Marfan’s Syndrome. Your essay does two things – it helps me understand better what it is like to live with lupus and also some issues which are common to other chronic illness “victors”. What especially resonated with me were the ever-present knowledge that, unexpectedly, this day could be our last; the need for sick humour (my illness causes unpredictable bowel incontinence so you can imagine the sick humour of that); and the lack of energy to explain or pretend to people who will never “get it” without totally alienating the whole of my local village. While I would never want to minimise the challenges and pain of our illnesses,the blessing of really knowing that “everyday could be our last”, when we have constantly to make choices about what we do and how we do it, is that we live much more intentionally each minute of every day than most of the “well world”. Again, thanks so much.

  • Brenda

    I am a mother of four, my oldest is 21 and my youngest is 18 mos. I was diagnosed when I was just 19 years old(19 years ago) and have had 14 surgeries, 9 of which was during my worst flare up ever after my 10 year old daughter was born. Not to mention 5 miscarriages to top it off. As of right now, my Dr. is putting me through a battery of tests once again. This time to see if I have MS, or if its just simply nerve damage that is causing my right arm and leg to be in extreme pain and at times so numb, that I can stick a needle in them and not feel it. My three oldest kids know and understand what I am going through, but my 18 mo old little girl has no clue as to why her mommy can’t walk without the help of this huge service dog by her side! With Lupus, you can never give up! You can never get depressed, as that makes the symptoms ten times worse. To hear the words of another mother who has lupus just makes me want to fight harder! Swollen lymph nodes,shooting pains,weakness in our limbs, MRI’s, nerve conduction studies, biopsies, needles, pills, did I mention needles? The list goes on and on. All I can say as a Lupus survivor of almost 20 years is, stay as strong willed as you can, be the bravest that you can be, try not to let stress get to you, and smile and laugh as much as possible! We can do it, as hard as it may be at times, we can do it!

  • Lyns

    what a great article, describes living with lupus perfectly. I have just printed it off to explain to my not-so-understanding work what I have to go through every day. thank you for sharing with us all.

  • This was wonderful. I think I totally understand because I’m the mom to two little boys, too. Please contact me!! I love talking to moms of boys and you having lupus helps me so much!

  • Thank you

    My kids (17 and 20) and my boyfriend try very hard to understand – but telling kids they must have a flu shot because they live with me and knowing they hate getting needles is tough.

    Trying to explain to Mr Wonderful that yes, sometimes I do have a bit of energy I want to use on something special, when he’s seen me need to sleep for three days because we went for a walk is also hard.

    And as for people beyond the family? I said something about the extra cost of travel insurance with lupus, and the response (from a nurse) was “but lupus can’t do anything that bad.”

    This was wonderfully written, and says it all.

  • Brandy, fantastic article! I can relate to every thing you just said. It is all so true. Beautifully written and I can feel the frustration in your words. Your words are inspiring and uplifting. I, having Lupus and MS, (double whammy) am so tired of defending myself to everyone. They still do not get IT after over 12 years of being ill. So, we as survivors have to keep going and not be victims. Thank you for sharing your thoughts with the rest of us “spoonies.” Much love and many “spoons.” Be Strong… 🙂

  • Iris

    Thank you for such a beautifully written article, Brandy! It is truly spoken from the heart and thank you for including “any chronic illnesss”, as we can substitute our own invisible illness in every sentence you wrote. Now I truly understand lupus. Every sentence you wrote rings true for my invisible illness as well and I am hoping to share your article with others, so that they may truly understand what it is like to live with an invisible chronic illnesses. It’s articles like yours that have inspired me and keep me going. We are so thankful to have you writing for this website. I am so thankful to have support from this wonderful website and know that others truly understand what we are going through.

  • Leah

    i dont have lupus, i have behcet’s syndrome, and it involves all the same treatments as lupus… i can so relate to this article.
    its so hard to not be tired, and settle in as a “victim” of your illness; it seems that everyone is already a victim of something anyways… i think after a while you have to make a conscious decision to beat this. i dont mean like beat it, as in be healthy again or cure it… but to over come it, and be just as good, as you, as you are.
    this was so inspiring to me… i feel so much better to know that there are all of these other people facing this battle with me.. we should all be very proud of ourselves, 🙂

  • Kimberly Casey

    This so perfectly explains my life and you articulate my attitude about the whole thing as well… I might go down, but I’ll be swinging!

  • Desiree Heath

    I love this. Humor is the key between crying, and laughing. I chose to laugh. Thank you!

  • Susan

    What I like is the fact that today you right knee and shoulder just don’t function. Then tomorrow it is something or somewhere else. Or, how about holding a cup of coffee and next thing you know, it is on the floor because your hand decided it was time to release.

  • Good article! I too have a “milk” tan and a love/hate relationship with prednisone. The only times I can move and think in a normal fashion are when I’m on prednisone, but I can only take it in an acute crisis because of the potential for long-term side effects. If chronic illness doesn’t teach you the meaning of irony, nothing will.

  • Suzy

    Great article – the only thing that I might add is to it is…constantly responding to strangers asking what is wrong with your face. I’ve begun to respond by telling them nothing is wrong and that is just the way that I am. It doesn’t seem to be a good enough answer and they insist that I am wrong and give me the card, number or name of their favorite make-up consultant. I imagine that they are well meaning, but please if you have nothing nice to say, please don’t say anything at all! I know that at time lupus makes me unattractive and would rather not have strangers point it out.

  • Pingback: A very worthy read about chronic illness | TeaBQ()

  • Anon

    Thank you so much for writing this. I don’t have lupus but know someone who does. This so perfectly articulates what dealing with lupus is like.

    Thank you so much for taking the time and energy to share this.

  • You stated this right to the point. Like the middle finger part and was at that point today. LOL. Will keep this article for friends who write me angry letters about how I changed over the last couple of yrs. Maybe they will cut me some slack. Thanks for sharing this. Speaks volumes-

  • As you know, Brandy…I LOVE this essay. SO perfectly said. Thank you for allowing me to share it with our community.