Lupus – A Mother’s View

 

IN Honor of Mother’s Day in the US, my mother wrote this article about being a mom of a child with Lupus.

My daughter Christine has had Lupus, with the accompanying vast array of symptoms, since she was 15 years old. During college, in her attempt to explain her illness, she wrote about Lupus and its debilitating effect on her energy, by a comparison to waking up each day with a limited amount of “spoons“.


Having spoons has always been an inside joke in our family. If Christine was having a particularly bad day, she might call me and say, “Mom, I have no spoons left today.” I often sign my cards to her-”May you always have spoons.”
©butyoudontlooksick.com
Christine has tried to educate our family, friends and even total strangers with her analogy. Well this is a view from the other side of the spoon, so to speak. Having a child means worrying your whole life about their happiness. Having a child with a chronic illness means worrying about grades, dating and makeup; but also about pain, medical tests and future prognosis. Somehow you survive.
Christine is often asked about what it is like to have Lupus. You see, she doesn’t look sick, so she is a curiosity to some, an enigma to others. Few people ask me what it’s like to have a child with Lupus, and I think it’s because they already know- it’s every parent’s worst fear. No parent wants to be healthier than their child.
Christine lives with chronic pain and fatigue and a constant pendulum swing of good days and bad. Being her mom means struggling not to be so effected by them, especially the bad ones. I am not so good at this. I have often found myself overwhelmed and in bed crying, after seeing Christine in a flare-up, or hearing that down, resigned tone in her voice. It’s a roller coaster ride I would prefer not to be on. But then there are her good days, and when Christine is having one, she seems to want to pack a lot of life, laughter and joy into 24 hours and luckily for me , I have often been around for the ride. Christine, more than most, realizes the gift of a “good day’, a gift most of us take for granted. Hopefully, she has rubbed off on me, and I try to appreciate the little things. I remember once taking Christine home from a doctor’s visit and she asked me to stop for a Mc Donald’s ice cream flurry. I felt rushed and tried to dissuade her, but she persisted, saying “mom, it’s such a little thing and it will make me happy.” I don’t really know why I remember that so vividly, but I think of it often and I try to cherish the little things that make me happy, like a warm cup of tea, or relaxing in my recliner.
Having a child with Lupus means trying to coax her into experimenting with vitamins, heat, cold, massage therapy, herbs, and physical therapy, whatever. I always think everything will work, while Christine approaches life more cautiously and often thinks nothing will work. She has been known to say I dwell in “Pleasantville”, but I like it here and plan on staying. Pleasantville is filled with hope and promise. I think in dealing with any chronic illness you always need hope, otherwise you might as well raise your hands up in defeat- the illness has won.
I used to save my sick days at work for my chronic colds, but for the last decade I hoarded them and used them oh so sparingly, just in case I needed them if Christine got sick. I found myself conveniently sick on weekends, as if my body knew I had no time to be ill. In reality, I always felt I could never be as sick or as tired as Christine must feel. That’s a difficult one- there’s a lot of guilt in feeling better than your child.
Being Christine’ mom often means waiting a lot. I’ve become good at waiting- waiting in doctor’s offices, waiting for test results (now that seems like an eternity), waiting in emergency rooms (always in the middle of the night), and even waiting for Christine as her sluggish body tries to catch up with her good intentions. It has meant being flexible, as plans need to be changed the last minute, to accommodate her unpredictable flare-ups. I used to feel that everything was important, but I’ve learned from Christine that the world doesn’t come to a halt if you are a little late or even have to miss something. I remember once trying to get her out the door in order to be on time for a doctor’s appointment, and Christine was moving very slowly that morning. I was upset because we would be late, but when we got there we still ended up waiting for almost an hour. A lot of what I worry about never materializes or turns out not to be as important as I thought. I’m still trying to remember that.
As a parent of a chronically ill child, I have encountered those who stop asking about how Christine is doing and how she is feeling, because they feel uncomfortable with any negative response. I thought of lying and saying things are wonderful, but most of the time I just say things are good and bad, which they usually are. There are those that continually ask about Christine, and I appreciate their good wishes, concerns and prayers. My closest friends don’t just ask about Christine, they ask about me. It’s easy to get lost in the shuffle. It’s easy to remind your child to take care of herself, and run yourself into the ground in the process. I have become so much better at being the caregiver than taking care of me. I am finally learning that lesson from Christine too. I have seen how important it is for her to take care of her body and her spirit, and I am thankfully realizing to do the same.
On the other side of the spoon it can be depressing. If your loved one is down, it’s a constant struggle not to be down too. Beside dealing with your own depression, the parent juggles emotions of fear, disappointment, anger and fatigue; all the while trying to be optimistic, calm and hopeful. I have learned though a lot from being on the other side of the spoon. I (along with Christine) am stronger than I thought. I have discovered many life lessons about patience, acceptance and joy for life I have shared many special memories with Christine, with a greater awareness and appreciation for them. I am so proud of the woman she has become, not because of the Lupus, but despite it. I guess I can say the same for me.
Written by: Janet Miserandino (Christine’s Mom)

©2010 butyoudontlooksick.com
  • Michelle Johnson Widemon

    I lost a child april of 2012 to chf then my middle daughter was newly found s.l.e with kidney failure i can related to having 25 years of tears, happy and sad day but at the end of my day i know God is there prayers and blessing to all

  • Janice (Virginia’s Mom)

    This was heartwarming for me. My Lupus child is my 31 year old daughter and it makes my heart break to see her flare-ups. I am a nurse practitioner and being a care giver is my career of 50 years but when it is your child it is entirely different and has so much guilt associated with seeking this child for so many years. My older daughter is an RN and she has no understanding of Lupus symptoms are the disease and refuses to accept the diagnosis, believing it to be a “made-up thing to explain/pacify lazy people.” They should cover Lupus for healthcare providers more extensively in school where most of them feel the real truths are taught.

  • Michelle

    My seven year old daughter was diagnosed two weeks ago. :( My heart breaks for her and for you. I’m so sorry for the pain that you have been through.

  • Michelle

    I also cried while reading your article. My seven year old daughter was diagnosed with Lupus two weeks ago (although she has been pretty sick for about 9 months now). You do a very good job describing the guilt/heartache/worry that comes from being the healthy parent of a sick child. Thank you for writing this and for giving others hope with your story!

  • http://www.facebook.com/kai.bowers.5 Kai Bowers

    I have S.L.E and am currently on chemo treatment, I also have a 19 year old son with lupus, I am 37…thank you for sharing, makes me feel not alone, and having two perspectives :)

  • Nour_hsn_1997

    its wonderful!!!!!!!!!!!!!!!!!!!
    i said it to my mother!!!!!!!
    she cried

  • Elisabeth Long

    I cried as I read your article. As the mother of an adult daughter recently diagnosed with systemic lupus and several other autoimmune disorders, I could relate to your gamut of emotions. I also relate and thus fracture on the inside, to my daughter, as I have battled fibromyalgia since 1992. My daughter lives far from me and life is complicated so I haven’t been able to just pack up and be with her when she needs someone so badly. Guilt upon guilt. So yes, as a mother, it is a struggle not to be down because of all that she is enduring; and somehow I feel down and guilty that ‘this’ all probably was passed down from me. I celebrate when she tells me she is having a good day, and wonder if she is just trying to avoid hearing my heart break again…so is just covering her truth. I would gladly take this rather than see her go through it. Thank you for writing all that I feel.

  • http://litochoro.blogspot.com melusina

    Thank you for sharing this with us. I was 7 when I was diagnosed with Lupus and for a long time I never even considered what my parents were going through. It is nice hearing a mom’s perspective to help me appreciate what my parents did for me even more.

  • Pat

    I have Sjogrens Syndrone and Fibromyagia and I would give anything if I had a Mom to support me.. I have been in a flare for almost a week and cant get to feeling good. My husband understands and knows when I have a flare but its just not like Mom would be.. God Bless

  • FitITGirl

    I could relate so much with what a wonderful person my mom is! I know how terrible she feels when I am sick and tired. She was with me during all my flare-ups and I have no idea what I’d have done without her close to me. She is in her 60s and is double my age and she still feels that she has to do everything for me to make my life easier and I feel bad for having letting her in such a situation, but she feels bad if she cannot help me out. Either way it’s a pain. I really do appreciate and am thankful for what a lovely mom and dad I have and above all a wonderful and loving husband. Others don’t truly understand my illness. When I’m having a flare-up and on steroids, people comment on me saying I am putting on. No one have any idea what pain I’m undergoing. It is terrible to live in a state of uncertainty not knowing what is next. I really do cherish the good days and would like to make the most out of it. Life’s not easy and Lupus really sucks!

    Happy Mother’s Day dear mom and Hope you all wonderful moms out there had a Happy Mother’s Day!

  • http://ButYouDontLookSick Donna Bryant

    Thank You Janet!
    I also have a daughter with Lupus, who is graduating from High School this year and entering college in the fall. We live in a small rural community and the word Lupus is not a popular condition. I always get comments like my mothers aunt has it or my second cousins brother has it…..then the dreaded that’s awful for you. Well it is awful at times, it is agonizing to see my child in so much pain, and so tired. Too tired to go to her last prom, or the get together at a friends house, because if she does she pays the price for it the next day.
    So many things that you said, I live also….the saving the days off from work, the miserable waiting at the doctors office, and waiting for lab results. There are some Physcian’s who do not understand the disesae and their stupid comments sometimes just about make me crazy…..We are three and a half hours from my daughters specialist.
    But after all this miserable complaining is said, there isn’t a more caring loving person as my daughter, and when she at her best she believes she can do anything, and I will do anything to help her succeed
    Thanks again, Janet!

  • http://aol.com Jennifer Taber

    This story is so inspiring and I can relate. I also have lupus, sjogren’s and fibro. It changed my relationship with my mom. During the search for answers, my mother had to physically advocate for me as the docs told me it was all in my head. She dealt with the frustrations, er visitis, flares, mood swings, anger, and watching me “cry” in pain over a life that would dramatically change. I don’t think it is easy on either end. I am a parent myself and I know in the beginning, I felt guiltly because it changed the way I parent my own daughter. I loved your story because you described to a T what it is like to have Lupus and also what it is like to be a caregiver. The both of you give me inspiration because it is easy to feel alone dealing with this disease. Hope you had a Happy Mother’s Day. Jennifer

  • Lara

    I am so blessed to have found your site and read your story. My daughter is six and was recently diagnosed with Lupus. She is currently having her second flare up since the diagnosis. It is very hard, emotionally, on a mother to feel better than her child and not be able to fix it. My heart is breaking and your story made me feel a little better. Thank you and God bless.

  • http://www.myspace.com/rocrgurl1023 michelle defaria

    Wow what an amazing story!! I feel for Christine and her mom. I have sjogrens syndrome and fibromyalgia, but I have a feeling lupus is going to pop up eventually. started having symptoms after a car accident when I was 27 and pregnant. I could not imagine having this at 15 at all. She sounds like an amazing soul. My thoughts and prayers are with you Mom. Oh and Happy Mothers day!!

  • Becky

    Christine is so lucky to have a mom like you. I know what it’s like to not have that support, and I hope how rare and precious people like you are. I know it’s difficult at times, but you are truly a blessing to her and anyone who reads this!

  • Nin

    Hi,I can empathise totally with Jess and Christine as I suffer with muscle pain, fatigue and brainfog but look well! I was diagnosed with Fibromyalgia, which has similarites to SLE (the latter of which is known to be an imitator of other diseases. I would urge anyone with muscle pain & fatigue to have a trigger point test performed by their doctor to check if they have Fibro’.If confirmed, please read the book written by Dr St Amand called “What your Doctor may not tell you about Fibromyalgia” and follow his protocol (like me).I’m recovering! Fatigue, muscle pain & many other symptoms are ebbing away for good! Best wishes from Nin

  • Jess

    I have adrenal insuffiecny and possibly lupus or scleroderma, it is a constant battle, I have had kidney issues since I was about 8 years old, it causes alot of kidney pain, and then it lead to what they felt was Fibromyalgia when I was 14yr old, I fought through school, somehow managing to make it to school, it didn’t always work out that way, I would get to school and throw up and then of course my Mom or Gran had to come give me medicine and I would go back to class. I can honestly say the only way I am still here is my Mom, she is amazing. I would have probably never graduated if it hadn’t been for my bestfriend Jessica who had cerbral palsy, and was such a inspiration to me. I remember when we first met, I was changing her, as she was wheelchair bound and needed to be carried or picked up if moved as she couldn’t herself, but we both laughed as we realised we weren’t the only ones in High School dealing with illness, much less having to wear depends, at least I didn’t feel so alone and she kept me going. College was harder, I wanted to be a nurse, but had to stop as I was getting constant infections. So much has happpened. I just am so blessed as you sound alot like my Mom. I would never be able to make it without her. She doesn’t work, she did, but when the business closed she really has been just devoted to being with me. We have a difficult family situation so it is just us, but we are good support for eachother and I know somehow we will survive. Thanks for your inspirational experience. I am 26yr old now, and like your daughter have really bad days and then good days. I try to not get down, but it is hard, but probably harder for my Mom than I know. I am so glad someone came up with a website for those who are truely sick but don’t fit in the “box”. Thank You!