Dear Lupus

Dear Lupus,

I friggin hate you! Look what you’ve done to me. Have I not already suffered an eternity of pain and heartache? Why are you doing this to me? You’ve destroyed everything I worked so hard for. My family could not survive all the destruction you brought with you. WHAT HAVE YOU DONE?!?!?

I looked in the mirror yesterday and all of a sudden I started to panic. I didn’t recognize the person looking back at me. It wasn’t me. It couldn’t be. I was never a stunning beauty but I did turn a head or two in my time. But this person in the mirror, it wasn’t me. She was old and fragile and appeared as if she had a long, difficult life. Where was my reflection and who was this old lady looking back at me? And all of a sudden, I felt sorry for her and I cried. For hours I cried, it finally hit me, I knew who she was…..

It was a long time ago. She was 17, full of life, in awe of everything that life had to offer. She had a beautiful future ahead of her and the world was hers. Nobody could stop her. She had big goals and dreams. She was going to study law and go into politics. She vowed to never be poor again and to be the first in her family to accomplish big goals. But she was too smart for her own good. She thought she knew it all, but she knew nothing and she ruined the rest of her life. One month after turning 18, she married a man almost twice her age. The next 13 years brought her misery and pain and near death experiences. But she survived and it made her stronger. Years went by and alone she remained while she educated herself, she started a career she loved, she took care of her children as best she could. Don’t get me wrong, it wasn’t easy. She struggled, many times she couldn’t make ends meet, and she’d cry when her lights would go out because she couldn’t pay the bill, but she was content. She escaped a bad situation which should have left her 6 feet under and yet, she persevered. Every year, things got better and she started to date here and there, falling in love with the idea of being in love, but no one special. And then it happened. After 10 years of struggles and sadness and working hard and just getting by, it happened. She reached top pay and she met the man of her dreams. No more money struggles. No more lonely nights. No more struggles of any kind. She was almost 40 when her life finally started coming together but it was worth the wait. Because of all the hurt and pain and sadness, she knew how to appreciate all the good things that were finally happening. Now all that was left to do was live happily ever after. She married Mr. Right, purchased a new home in the suburbs, and they became pregnant with their love child. Life was great. Even through all the physical and psychological abuse that she endured, she finally knew what love felt like. She adored him and she made sure to show him everyday how much she loved him. All that was left was to live their lives and enjoy every minute.

She was so delusional. She always knew subconsciously that this lifetime would never allow her to be happy. And the moment she let her defenses down and opened up her heart, mind, and soul to this new life, the moment she allowed herself to believe that everything would be okay, everything came crumbling down. Her perfect dream was just that, a dream. How dare she believe that she was entitled to anything other than misery. How dare she?!?!

While she was pregnant, you decided to come along. While shopping for the crib that represented a major part of her new life, the dreaded phone call came. Yes, she found out over the phone that her life was about to change forever. You have Lupus…. The year or so of happiness that she experienced would be the only happiness she’d ever know. Although she didn’t realize it right then and there, the rest of her life hung precariously by a thread. In a matter of months, her house of cards started tumbling down. Shortly after her diagnosis, she lost the job she loved so much. But worse than that, she could no longer contribute to the new house. There were no savings, nothing to fall back on, nothing. She had a new husband, new house, new car, new baby, new life, no job and now had to contend with you, Lupus. But Mr. Right continued being Mr. Right. She couldn’t believe her luck. He made her believe that everything in fact would be okay. He worked twice as hard to cover all the expenses on his own and not once did he resent her, not once did he make her feel less than, not once did he allow her to think that she was a burden or that he was unhappy. He was the most supportive husband ever. He accompanied her to all her appointments and as she got sicker, he continued to stay by her side and her love for him grew stronger and stronger. How did she get so lucky. Her existence until she met him could only be described as mediocre. The first 30 years of her life were miserable while the 10 years that followed were just about getting her mind right and picking up the pieces of her shattered life. She was so full of joy and ignorant bliss. She always prayed that her life would come together like this some day, and there it was, she attained it. She finally knew what the ever elusive true love was all about and she looked forward to the day when they could both sit back and relax, sipping lemonade on the front porch. She was so disillusioned. How dare she believe that even through all the years of misery that she deserved anything else but more pain and misery.

Oh my dear Lupus… you don’t even understand the extent of what you did. Five years into the marriage, Mr. Right turned into Mr. So Wrong. One day he declared that he “did not sign up to be with a sick woman”. He called her ungrateful and accused her of taking advantage of him. What was happening, when did he start resenting her, when did he stop loving her? He turned on her in the amount of time it takes to flip a switch. Up until that day they professed their love for each other constantly and after those words were thrown out into the universe, thins were never the same again. Slowly but steadily, the marriage began to dissolve. Never again would either one of them hear the words I love you from each other. Then the pet names stopped and they started calling each other by their government names. There were no more kisses on his way out the door for work. There were no more daily phone calls to check up on her. Shortly thereafter he moved out of the master bedroom and moved into the guest room. But the worst part of all, to add insult to injury, he started being mean to her and treating her badly. She never went into remission again.

Another two years have gone by and she has never been the same. She has literally stayed in bed for the past two years. She has no friends, she’s pushed away family, preferring to spend her time alone as opposed to having to answer all the insufferable questions. She only leaves the house now to go to the doctor and nothing else. Since you were first introduced to her, year after year she’d get a new diagnosis. So not only did she have to contend with Lupus, now she also had Rheumatoid Arthritis, Stiff Mans Syndrome, Kidney Disease, GERD, Sjogren’s, Raynaud’s, Major Depression, Anxiety, Asthma, Emphysema, Post Traumatic Stress Disorder, Chronic Pain….. and there’s more, but why bother at this point. She really stopped living a long time ago and now she’s just surviving. Had it not been for her youngest daughter, she probably would have died by now. You should see what you did to her, not only physically, but mentally. She cries all the time now, inconsolably for hours on end. Her pain has become so intense she can barely walk anymore. Her meds don’t work because her liver doesn’t metabolize them. She’s hanging on by a very thin thread. But we all know that everything is all her fault. Maybe if she had not been so desperate to love and be loved, maybe you wouldn’t have come along. She should have just accepted the fact that she wasn’t meant to know happiness in this lifetime. Her first husband promised her she would always be miserable. She should have just listened instead of trying to evade the inevitable. Happiness was never supposed to be in the cards for her. But fortunately, she did know love, pure and unconditional love; not through Mr. Right or Mr. Wrong or any other man that may have spent a season in her life, but rather she experienced it with each child she brought into this world. Honestly, it should have been enough, but kids ultimately become adults who leave the nest to start their own lives. And so without even looking, she found the companion she loved like no other and he was the one who hurt her the most. But ironically, even though some days she can’t stand the sight of him, she still loves him from afar. They are bonded for life through that beautiful little girl they are trying to raise. But besides that, she actually believed that he loved her for a little while and at the time they met, she desperately needed that love. So at least now she can say she loved and lost….

That was who I saw in the mirror. Her whole life presented to me in some crazy flashback that wanted to appear as if it were me. But it wasn’t me. It was that wide eyed little girl who once thought that this great big world had so much to offer her and never would she have imagined that this would be what her life was like now. How sad to look at her now. I still cry for her every day. So much promise, so many dreams, so much to give, a big heart with which to receive, brought back down to earth, her head finally out of the clouds. Sorry hon, but that life just was not meant for you. But from now on, I’ll stay with you, I’ll look out for you and I’ll teach you how to never get hurt again. It’s not going to be okay, but it will be okay I’ll join you in the mirror so you won’t feel so alone. It will be okay…… I hope.

I FRIGGIN HATE YOU LUPUS !!! Look what you’ve done to us…. LOOK DAMNIT !!!

4 thoughts on “Dear Lupus

  1. Hey guys. I really hope you enjoyed reading my last post entitled “Dear Lupus”. It took a lot out of me to put these thoughts on paper but it was actually quite therapeutic after it was done. I also wanted to let you guys know that I wasn’t aware I was getting comments on my posts so therefore I haven’t been responding to anything. But I did want to acknowledge those who have been commenting. Thank you so much. And no worries. Slowly but surely I’ll be working all these kinks out very soon. Thank you all for being such loyal followers and be on the lookout for my next post. 😊

    RIA 🦋


  2. I have been feeling so hopeless lately. I feel like my spouse of 30 years whom I always thought supported me 100% is getting tired of living with a sick person. I have just started blogging about my illness in the hopes that I can come to terms with having a lifelong noncuraboe disease. I was diagnosed in Dec 2006 about 8 months after my dad died of cancer. I have been in a downward spiral for about 6 months. I want my old self back. I too look in a mirror and wonder who this old sick looking woman is. Thanks for your post.


    1. Aww hon, I’m so sorry. It’s so devastating, isn’t it? I still cry almost every night and it’s been a couple of years already. But I think that’s why I started to write. I was very close to doing something very bad and I found that writing and finally talking to other like minded people seems to help. I would really like to talk to you a bit more if you want an open ear and someone to share with. My personal email is

      I really hope to hear from you. 🙂


      1. Awe thank you and I will be in touch for sure


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this:
search previous next tag category expand menu location phone mail time cart zoom edit close