Feeling Guilty Because of Lupus
When I used to hear of somebody being diagnosed with an illness my mind would wander straight to pity and sadness. I would just assume they felt sorrow. After being diagnosed with lupus I didn’t know what to expect, but I can tell you for certain that I never expected to feel as guilty as I do now.
How is it possible to feel guilty for being sick? I’m the one who’s unwell. I’m the one who will live with this forever. I’m the one who will have to endure it all. And yet I still can’t rid myself of the lingering feelings of guilt that eat at me, day-in and day-out.
I feel guilty that I’m not the only one who is getting dragged through hell by lupus, my loved ones are being towed along with me. As strong as I know they want to appear, I’ve seen the dark circles under their eyes, the panicked expressions and the pain clear on their faces – and I know it’s all because of me.
I feel guilty that I’m not nearly as independent as before, breakdowns occur almost like clockwork and sometimes I just can’t cope on my own. A month will pass without any complication and then BAM! Despite doing well, I find myself in more quicksand, and I’m being suffocated all over again. But this time it’s something new.
I feel guilty because I’m an adult, and my parents should be resting easy on the knowledge that they’ve raised a decent human being who will make it on her own. However, there likely won’t ever be a time when they aren’t subconsciously worried about their chronically-ill eldest daughter.
I feel guilty that I can’t get out of bed earlier, which results in wasting another day of beautiful weather, because I’m just too tired to make the most of it. Every day I lose to my fatigue, adding to my stockpile of guilt. I know that one day I’m going to look back and wish I would’ve tried just that little bit harder to make it count.
I feel guilty when I waste someone’s time because I didn’t factor in how long it would take me to wake up and get ready, so I’ve kept them waiting on me since I’m late yet again!
I feel guilty that little Kristiana was counting on me to make something of myself. I want to tell her that I’m sorry and she’ll never know just how hard I’m trying right now. Sometimes I feel as if I’m failing her, and it tears me apart.
But most of all I feel guilty for giving in to my human nature, for being a social creature and craving love and relationships, as I know it means sucking others into this black hole of pain and hurt.
I’m always going to feel guilty for having lupus and my stockpile of guilt will continue growing until the day I die. Looking around, I can see just how much burden my illness puts on those I hold closest, and can’t help but wonder how different our lives would be if I lived without it.
Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to lupus.
About the Author
Sheneka
The feeling of guilt never leaves me as I am always the top concerns of my husband, mom, and sisters. With every family event or outting my condition has to be considered. I have no children, but I feel that I'm a burden to my family at times, although they attempt to reassure me that I am not. I hear my mom crying and see the frightened looks on my husband and sisters faces when I am sick and hospitalized, and this breaks my heart. I feel bad for not being the person that I used to be. I was a strong independent daughter, sister, and wife who took pride in my career and family; as well, I worked hard for a nice lifestyle. I am a Master level Social Worker, but haven't been able to work since 2013. I once found pleasure in my career, and catering to my husband. I enjoyed cooking, but can no longer prepare meals for my husband as before because it's too tiresome, so, my mom or sisters prepare home cooked meals for the two us. I have a wonderful support system, and I know that I am tremendously blessed, but I wish that I didn't bring so much concern to my family. I often minimize how I'm actually feeling just to put them at ease. However, I can never fool my mom, she sees through my eyes.
Peace, Blessings, Healing....
Tim Bossie
Hi Sheneka. Thank you for sharing your feelings and emotions with us. It is a very brave thing to let these thoughts out there in the public. Having said that, I am sure that as you feel guilt there is also a tremendous amount of love for those around you. I often tell people that these feelings of guilt are not really "guilt" because of what you've done, but "guilt" because of what you can't do. But, the reality is that you can do what your family needs from you the most... love them, care about them, and continue to allow them to help you when you need it. I can tell you're a strong woman, as it isn't easy to mask the pain you're in, and I can also tell you this... your family knows you're strong too. Sometimes doors close in our lives to help us focus on the doors that are open. Again, thank you for sharing!
Kristiana Page
I'm sorry that you feel so much guilt but glad to hear you have such an amazing support unit around you!
I know the looks you talk about with your family, I saw it in my parents eyes when I was first diagnosed.
But you're so incredibly strong and just as you gain strength from those around you when you lean on them, they too gain strength from you and that fighting spirit you carry with you every, single day!
You're not in this alone and you are so loved.
You've got this!
Kristi xxx
Lucy Flynn
Thank you for sharing!! I feel tremendous gilt myself. I just didn't have the courage to verbalized it!
Feel better Kristiana!!
Kristiana Page
I'm so glad this resonated with you! Hoping you're doing well!
Best,
Kristi xxx
Caroline
I was just talking about this very thing with my husband. I was able to cook for the family the last few days. Even did the dishes and wiped down everything. My husband scolded me for over doing things. All I could do was wipe away tears and remind him that it was the best few days I've had in a long time. Please don't take my joy. Let me enjoy that feeling of having actually accomplishing chores and cooking up a freezer full of food, a gorgeous clean kitchen and the fact I got my sports bra on and kept it on all day without moaning about how my skin hurt.
For this spoonie, I had a good run. Crossing fingers for a great tomorrow. :)
Kristiana Page
I'm so stoked that you had some good times and I know how much love goes in to preparing a meal for a family.
It's one day at a time and cherish anything and everything that comes your way, I wish many more good days your way!
Sending huge amounts of love!
Kristi xxx
Francesca (Lupus_Beauty)
Wow ? THANKS to ALL OF YOU! For once, every one of you Kristiana, Sheneka, Lucy Caroline & Tim (for your insight) summed up the total me. The tears are flowing because I'm you and you are me, fellow lupians. Since my diagnosis 7/19/2008, emotionally I'm all over the place. I harbor surmountable guilt, shame, and devastation on this arduous journey. Like Sheneka, I hold a Bachelors in Sociology/Criminal Justice, Masters in Business Administration, and was working on a PhD in Educational Leadership. Needless to say, after being diagnosed with SLE along with a host of "other " auto immune disorders, everything crumbled. I had to leave my career, my 18 year marriage ended in divorce, which left me with two wonderful girls to raise (now 21 & 11), my family lives 700 miles away and I have no real friends. The things I use to enjoy, such as traveling, photography on nature trails, baking, DIY projects around the house, gardening & spending quality time with my children and it's all gone. My 11 year prefers to hang with her Father, although I'LL NEVER SHOW it hurts like hell. I'm reduced to a hermit confined to my room. It's always something. My mind is contantly on autoplay of the things I use to do. I've NEVER SHARED THIS WITH A SINGLE SOUL, but felt I had to. I surely don't want to sound like whiny or a complainer, so all of this is stored by file and floor number of my brain. I look out the window and wonder, what is my purpose here? I'm a Lupus Advocate when asked while at an appointment.... I just stick with the facts, just the facts...like I'm Sybil separating personalities-the Lupian from the normal human?!
Gosh, I've run amuck here, but I'm so grateful to each of you! If you take away nothing else, take away from my story that you boosted my confidence to step out of the shadows, to tell a portion of my story I lacked the will power and strength to say!? My marathon continues!
Kristiana Page
Please don't be afraid to share, we all need each other in this great battle! Though it may feel it sometimes, know that you're never alone and that someone - even if it's me, on the other side of the planet - feels what you do and is here for you.
You're a fighter, don't stop now I know you've got this!
Sending so very much love!
Kristi xxx
Lynn
Wow, I just can't explain how much reading this has hit home with me. I was diagnosed about 4 years ago and didn't realize how devastating lupus could be. I continued working and living a relatively normal life with just inflammation and muscular pain and taking only prednisone. Little did I know having lupus can affect the central nervous system and caused me to have 4 strokes which cost me my job and landed me in the hospital on so many meds and in physical and occupational therapy for months. I am so grateful to be here and the recovery has been great but I feel a huge amount of guilt for not being able to contribute to our household financially and even the daily chores around the house take everything out of me. I never know how I will feel Day to day so making plans just doesn't work. I just want to be able to run like I use to do...3 to 5 miles a few times a week, or to be able to lay out in the pool and relax with an ice cold drink ? Those things were the best stress relievers I had...gone now of course. Trying to find new things that work for me. Warm baths make me swell up ridiculously, apparently I can't do hot and cold it causes the raynauds to flare as well. So far walking my dog and playing solitaire is helping and I'm trying different relaxation therapies suggested by my brother. I have 4 children, 3 of them are grown and live on their own and 1 is 10. I feel so bad that I can't do the things with him I did with my other kids. I try real hard and some days I can shoot hoops with him and I am always at his soccer games and practices. Just wish I could be more physically active with him because those are some of the best memories I have with his brother and sisters. Anyway I am going on and on so that's enough ? I am praying for all of you as I do daily for my family and the burden I feel weighing on me since this devastating diagnosis. ??
Kristiana Page
Oh Lyn! I'm so sorry to hear about all of that!
It makes me happy to hear that you're still on the lookout for the little things and that slowly you're finding them one by one.
I'm sure you're little one knows just how much you want to spend time doing physical activites with him and appreciates it even more when he actually gets the chance.
Don't let the guilt eat at you, know that you're being the very best you can.
Sending so much love!
Best,
Kristi xxx