Parenting with Chronic Illness: One Mother’s Lessons Learned

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“We Are Not Alone and We Are Good Parents”

Parenting with Chronic Illness: One Mother's Lessons Learned

Five years ago, shortly after my second son was born, my life was thrown a curve ball. I woke up one morning to all over body pain, unable to walk. My hands were curled into fists. I was caught unprepared. While I had dealt with unexplained symptoms and pain for a number of years prior, I did not have a diagnosis and my symptoms had never been this severe.

In that morning, I went from being a young mother to being chronically ill. My pain and symptoms were so bad I could barely hold my newborn. I needed my mothering instincts to kick in and I could barely take care of myself. If not for my sister, those first months after my diagnosis would have been even harder.

Uncertain about My Parenting

Even though much time has passed, every now and then, I find myself uncertain about my parenting abilities. I wonder if I am coping effectively enough with my RA and fibromyalgia to be the parent my children need and deserve.

I might be chronically ill, but I am still my children’s mother, and parenting often requires that I take attention away from myself and give it to my children who need me more. I am different than healthy parents because I parent with pain and fatigue on a near daily basis.

I am not the only one who suffers from the effects of my chronic illnesses. My sons, like other children with chronically ill parents, have many questions and insecurities about the future. The best I can offer them is my honesty and openness about the impact of chronic illness on all of our lives. I know providing age appropriate answers to children is not an easy task, but it is necessary to put children at ease.

What My Kids Question

My 5-year-old sees my chronic illnesses in the present. He has never known a healthy mother and his questions have more to do with how I am feeling now versus how I will feel tomorrow or in the long term. He understands that sometimes Mommy hurts, or that she is too tired to play with him. What he doesn’t understand is that I am chronically ill and that I will be for the rest of our lives.

My teen, however, understands that permanence. He knows I am chronically ill and that I will be sick for the rest of my life. While he doesn’t necessarily understand the specifics of my illnesses, he has questions about the future and whether things will get worse for me. He worries about schedules and routines and often asks to help out. He needs reassurance that someone will always be there for he and his brother and he wants to believe that will always be me.

I may not have the answers to all their questions, but experience has taught me that my attempts at honesty hold more value than dismissing my sons with an “I don’t know,” or telling them, “Tomorrow will be better,” when I’m not sure that will be true. I’m not sure how I will address their concerns when they are older and if my health worsens. I just know their lives are not easy or normal because I am not healthy.

Lessons Learned

Being chronically ill may have changed me, but it has also changed my children. I know my children are kind and understand empathy more than most children their age. I know they value honesty and openness and are sensitive and caring. And, as they get older, I know they will be better prepared for life’s obstacles as a result of the lessons we have learned as a family, dealing with and managing the effects of chronic illness.

I, too, have learned some valuable lessons. I have learned that removing guilt is best for my children and me. I cannot be the parent they need and deserve if I feel guilty that I am sick. Moreover, I know I cannot fight flare-ups. I just have to allow flare-ups to run their course so I can recover and go back to giving 100 percent to my children.

I know hiding my symptoms from my children only scares them. By sharing what I am feeling, I am allowing them to feel involved and I remove uncertainty. Further, I have found my children are more resilient and more empathetic than I ever imaged they would be.

I have learned to appreciate the days where I feel healthy, strong and on top of my game, and I have learned to make those days count.

Finally and most importantly, I know that being sick does not make me a bad parent. If anything, I try even harder to make my parenting count.

We Are Not Alone and We Are Good Parents

There are millions of parents living with chronic illnesses and trying to balance being sick and raising children. We are not alone and we are good parents. We are responsible for both our own health and for our children’s security. That means we continue to be parents despite chronic illness and we pay particular attention to how our children are affected. Sometimes that means parenting through the pain and fatigue in order to offer them a sense of normalcy, and other times it means leaving the channels of communication open between you and them.

Much has transpired since those first few months after my diagnosis. Since then, I have learned to better manage my disease with medication and good nutrition choices. While I am not asymptomatic, my chronic illnesses have not taken away my ability to be employed or to care for my children. Granted, I have had many moments in the past few years where I questioned my ability to balance my chronic illnesses and my parenting. Nonetheless, knowing that I am raising kind, caring, honest and prepared children allows me to question my parenting less.

Originally posted at Arthritis Connect.

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26 Comments Add yours

  1. Jane slaight says:

    May I compliment you on a great article. I also deal with RA,fibromyalgia as well as chronic fatigue, multiple back issues esp low low back, diabetes, hyperthroidism, obesity, dianosed with mythensia gravis and have had two pacemakers and two long tough bout with bacterial endocarditis. I woke one morning to the dibilating fibromyalgia that so many dont understand, back when so many medical personnel disagreed it even existed. Just as I was succumbing to the pain daily that becomes unbearable, they delivered a big Jazzy wheelchair and life instructions! I fought this as a “no way ” attitude. First changed doctors, the first one ( a pain specialist) put me on what I found to be miracle! Fentantyl transdermal patch- these took about 3 weeks but suddendly I noticed I wasn’t taking as many pain pills and I was better! Then I got shingles and they are the most painful things ever and last and last! I was put on lyrica and found the fibromyalgia improved. When the shingles ended i ask to remain on lyrica and Dr Agreed as research supporting helping Fibromyalgia. My next step was to work off the 29 pills I took daily by halfing my dose then cutting to every other day, etc. then I went to a rehab chiropractice clinic driving 60 miles to get on a DMX machine that slowly stretch my spine. Two months later i have been off pain pills etc for 3 weeks. I’m cutting pain patch to changing on fourth day instead third. I feel I have my life back today. Did my husband,3 kids understand? No but they tried ne supportive even if just leaving me alone to cry:). But getting proactive, finding right doctors, exercising on pool at gym, and not letting it rule me was the coping mechanism that worked for me. And from the beginning using the Spoon Therory and knowing my limitations at ALL times , realizing just because I may have a good day, realizing to enjoy it. Dont try catch up and wear yourself back down in one day. Know life hands us lemons and remember how to make lemonade!

    1. Lana says:

      Thank you for your comments and kind words!

    2. G Vidales says:

      Jane, have you read about ehlers danlos? Sounds like you should look into it. I kept getting so many DXes but my cause was EDS.

  2. ladymigraine says:

    Reblogged this on ladymigraine and commented:
    After another beautiful mothering comment on a recent post, reading this was like balm to my battered heart. I am not alone.

    1. Lana says:

      You are definitely not alone. If your kinds are turning out just fine, you are doing something right.

  3. This hit so close to home! I was diagnosed with liver disease when I was pregnant with my youngest. My oldest was 3 at the time. Thankfully he only has a few memories of all the fun we had before I got really sick. He asks questions every day and I answer them with 99% truth. My baby knows no different. Most days I feel so guilty. I feel responsible for my medical bills and beat myself up for not being able to be the mom that I want to be. Great post! Thank you for sharing it!

    1. Lana says:

      I still have my moments where I beat myself up about being sick and whether I am there enough for them but they are turning out just fine so I must be doing something right. Thanks for visiting and commenting.

  4. Jane-Ann Davies says:

    Relate to this as have two wonderful teenage boys,who have grown up only knowing me with an ongoing chronic disability,which effects me mentally as well.
    They are empathic,congruent and always on hand to help look after me on a bad day.
    Am blessed to have them,always caring.

    1. Lana says:

      Isn’t it amazing how wonderful our children have turned out despite our worry? Thanks for visiting Jane-Ann and thanks for your comments and kind words.

  5. Suzette says:

    I am a 50 year old ‘EMPTY NEST” mom who raised my children with a chronic illness (seizure disorder). There wasn’t any pain then but always fearing I was one seizure away from losing my driving privileges was frightening. My symptoms stayed hidden unless I pushed myself a bit too hard then they became present and would force me

    to rest. Otherwise, you could not tell I was sick so I would just tell my children I was tired from work and they easily
    accepted that. About 11 years ago when my last child entered high school the symptoms (dizziness mostly) affected my driving abilities. I was still working full time and a single mom with 3 teens so I was on the go constantly. The episodes frustrated my daughter and because they had not grown up with their mom being sick they did not understand what or why I was “acting” this way. I realized then that I probably should have talked about my illness more instead of trying to hide it so I could “protect” them. It might have helped better prepare them for a decline in my health in the future.They might have been alot more compassionate, too! Thankfully, now, 10 years and after having to leave my job, they get it. They understand why mom had to “take her pills” all those years ago. It is still a challenge sometimes for me, and for them, but the focus is not on the illness as much, but on each other.My grown kids are extremely compassionate and have voiced how much they appreciate the time and effort I put into their lives and we are able to talk about it when I am not having my best day without the fear. So we really enjoy and cherish the good ones! Also, I remarried my best friend who is a kind, compassionate man and a blessing to me and my kids so I just take one day at a time and leave the rest to God to worry about the details.

    Your children are, truly, blessed to have you. I know… Have a wonderful day!

    1. Lana says:

      Hello Suzette! Thank you for your comments and kind words!

  6. I saw your blog post on a Facebook page and it occurred to me some similarities your illness took to mine. Intermittent symptoms over some years and then a sudden decline into incapacitating ill health. Although in your case I would suspect that your immune system returning to normal after child birth may well have precipitated your sudden decline.
    Increasingly medical science is finding more and more pathogens causing human health problems often zoonosis and often stealth infections which we have yet to develop good tests for.
    My own diagnosis were fibromyalgia, ME/CFS, arthritis, Muscle weakness, Musculoskeletal Disease, polymyalgia Rheumatica until a chance course of antibiotics improved my health and led General Practitioner to consider Lyme Disease, eventually with a clinical diagnosis and long term antibiotics i made a very good albeit long recovery.
    RA well actually Juvenile RA – it was a cluster of cases that led doctors to discover lyme Disease in Connecticut and yet 30 years after that discovery Rheumatologists and doctors in general are very slow to consider Lyme Disease or the many other tick borne diseases as a differential diagnosis. The 30 years of controversy driven by money and egos has had untold suffering on thousands of patients that eventually found they had this disease many thousands more will go un diagnosed and incorrectly treated for the rest of their lives.
    I do hope you take time to read my blog and look at some fo the evidence presented on it that shows that Lyme Disease is not so rare or easy to test for or simple to cure as our health Authorities are telling doctors. The sometimes poppy seed sized tick can easily be overlooked and not everyone gets the typical bulls eye rash. The testing even if we get one can still miss 50% of cases and so it needs to be a clinical diagnosis and part of that needs to be response to antibiotics good and bad( herxheimer reaction).
    Good luck in finding what is driving the inflammation in your body which causes your symptoms, it is most likely infection and probably a bacterial one although there will no doubt be many other complexities going on as with most people with Chronic illnesses.
    Dr Horowitz presentations are very interesting some on my blog but this extract from his new book WHY CAN’T I GET BETTER?
    Solving the Mystery of Lyme and Chronic Disease is good http://us.macmillan.com/BookCustomPage_New.aspx?isbn=9781250019400

  7. Emma says:

    HI Lana, what a wonderful article. I run a website for women with the genetic disease Cystic Fibrosis and have it myself. A lot of what you have said rings so true to me as a chronically ill mother. Would you be ok for me to put a link to this article on our website at http://www.cfmothers.com?

    1. Lana says:

      Yes, please feel free to.

  8. Emma says:

    Thanks so much! A lot of our members have already found it a brilliant read on our FB group as someone linked to it.

    1. Lana says:

      Thank you for sharing it!

  9. I have three children and I became chronically ill when my oldest was 7 my middle child was 6 and my youngest was 4. The illnesses came on hard and they left me a mess. Between the diagnosis of fibro, CFS, RA, lupus, degenerative disc disease, peripheral neuropathy, migraines and now recently Sjögren’s syndrome. My children saw me through a lot of illnesses. They saw me through remissions and also saw me push myself beyond my limits at times as I wanted to do everything for them and be at everything they did. As they got older they got very vocal about stepping in and helping me around the house with things and also not having to be “super-mom” all the time. I am not saying there were not times during the teen years there were flare ups and things over my illness because that did happen several times. They are now adults of 25,24 and 22 and I am so very proud of the people the have became. No matter what they still are around for mom whether I need them or not lol but I have to say I am glad they are. I am so very blessed.

    1. Lana says:

      Wonderful to hear about your kids. I think that we try so much harder at my parenting because we are trying but all the while, our kids are turning out just fine.

  10. Rebecca says:

    Thanks for sharing this, it really helped me alot. I have two children one is 2 years and 11 month old and with both pregnancies very rough for me, I made it through and I thank God everyday that Im still here today and my children are blessings to me, I thik quite often that if it wasnt for my two blessings I wouldnt be where Im at today!! I have the fibromyalgia, chronic back and hip pain, oseoarthritisis, chronic fatigue syndrome and other medical conditions and it is challenge everyday not knowing and cant plan anything because of it and no longer able to work outside the home as well. It’s very difficult to try to explain my conditions to other people and especially my kids seeing me like this just kills me but with a wonderful support group Im able to make it through another day!! Thanks again for sharing, it really helped me!!

  11. scherisce clinton says:

    Hello and I agree dealing with a chronic illness, ESRD/HTN an on Dialysis, needing a machine to live your children are often concerned watching you daily weekly, monthly and your a good parent, but hoe do you tell them your gonna be ok when you might not be? My youngest daughter is autistic, who knows im sickly but dont have a clue what is dialysis?I need a kidney transplant and raising children an having a chronic illness can become very overwhelming. But like u said it can be done.

  12. Julie says:

    Parenting a 3 year old has been difficult. Mostly the psychological effects of not being able to be the active mom and take her to play groups. We’re also a military family and always moving which is another struggle. She’s an “only child”. The pregnancy was difficult on my body and I’ve heard similar stories. I did not have any pain before the pregnancy but now deal with chronic pain in certain joints, neck and spine mostly.

    I was initially diagnosed with chronic fatigue and then fibromyalgia after the pregnancy by a bunch of general doctors but was able to finally be diagnosed with Ehlers-Danlos Syndrome – Hypermobility Type, from many hours of research. It is a connective tissue disorder and encompasses the degenerative spine disorder, the low blood pressure and joint pain. There is the Ehlers-Danlos National Foundation that talks a lot about the disorder, and offers a lot of resources if anyone is interested in finding out if they actually have this connective tissue disorder rather than the general diagnosis of Fibromyalgia and/or CFS. It really helped me connect the dots and their are key doctors, especially in the Maryland and D.C. area that specialize in treating the multiple systems that are affected by the disorder.

    1. Lana says:

      It is definitely not easy. I hope that things start to look for you and that you need more good days than bad.

  13. Lily says:

    Hi, I just wanted to share a free resource for children about having parents with chronic illness in case anyone here could use it with their children. I’m an SLP and used to making social stories, so when I was trying to find a way to help my little cousin whose mother has a chronic illness (although not fibromyalgia or arthritis, she has many of the same struggles), I made her this story. It’s free to download from TeachersPayTeachers.com. Here is the link https://www.teacherspayteachers.com/Product/Story-Emotional-Coping-with-a-Parent-with-a-Chronic-Illness-1909461
    I thought maybe it could help some of the people who sought out this article and who have young children.

  14. Claire says:

    I just stumbled across this as i was wondering how other single mums like me actually are coping with illness.i have a 12 year old girl who has already being told that she needs to help mommy more since i got diagnosed with a kidney disorder after just getting over a brain tumour which involved radiotherapy and over a year of recovery.At the moment i am trying to stay out of hospital as i dont have any support from family as my ex partner allienated me from people who were in my life.i am so scared now to pick up the phone to these people and say i am now sick and really need support.all i can say to everyone else here is that we have such strenght of character to deal with single parenting and illness and to say doesnt that say something about our kids and the adults i know they will become.my child now knows that mommys health will always have its issues but she still always says thanks mom for the lovely house you provided for me and all the hugs and kisses you give me ever day eventhough she can see the fear i have on my face.she says she is happy with what she has been given by me.she has journeyed through all my illness and continues to be a beautiful happy teen.

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