A Parent’s Love

 

A thought occurred to me this morning, what is like for the parents of the chronically ill?  I have too many diagnoses to properly name, but the two prominent ones are Fibromyalgia and Lupus.  I first started showing symptoms of chronic pain around twelve years old, but did not actually have anything “wrong” with me until I was fifteen.  I was not diagnosed until I was twenty.

I often think about the roles of my parents in my battle with chronic pain and illness.  I had never considered their feelings before, or what they must feel about how I am doing, because quite honestly, my battle has been very overwhelming because of the level of pain I deal with every day.  I could even admit to being selfish, but most of what I do is out of self-preservation.  How saddening it must be for parents to see their children struggle in pain, knowing that there is so little they can do to relieve it!

In the case with autoimmune disorders, like Lupus, and central nervous disorders, like Fibromyalgia, there is no known cause.  There is no cure.  Do my parents wonder if they did something wrong?  Do they wonder if they fed me the wrong food, expose me to the wrong chemical?  As a step-parent, I understand wanting the best for your children.  I would sail over the moon to do almost anything for my kids.  There is nothing that my parents did not do for me while I struggled to find a diagnosis.  My mother went to every doctor’s appointment, every therapy, and every second/third/forth opinion.  My Mom is my role model for motherhood.

Even today, as a married adult with children, my parents still do everything they can to help me.  We speak on the phone weekly, even more than that on some weeks.  My parents are my heroes.  If there were cures for these diseases, I know in a heartbeat that my parents would do anything in their power to help me obtain it.  That is the true testament of their love, everything that they have done for me throughout my entire life.

Article written by Staff Writer, Ashley Morgan

 

Ashley Morgan has been diagnosed with Fibromyalgia since 2005 after spending 5 years undiagnosed then misdiagnosed.  Other secondary diagnoses include: Lupus, Hypermobility Syndrome and Sjogrens Syndrome.  Originally from Glendale, California, she now calls San Antonio, Texas home.  In her spare time, she enjoys volunteering at her church and spending time with her husband and step-sons.  Find her on twitter at @ashiemorgan.

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  • Betsy

    My mom has been wonderful and has allowed me and my daughter to move in with her. Epilepsy, autoimmune desease, chronic fatige, and depression to name a few of many health issues I suffer from, has made it extremely hard to do it on my own. Unfortunatly I can see the worry in her eyes as she tries to stay possitive for me and my daughter. I myself had a daughter that died from a genetic disorder at 6 moths and know I would have quickly taken her place. God bless all the mothers that sacrifice so much for those of us that couldnt survive without them!

  • Although I am not a parent, I too am very often concerned about them. I am 25 years old and was diagnosed with an autoimmune liver and lyme that caused cirrhosis and I am on a transplant. I am in bed 18 hours/day still living at home. My parents are in their 60s and are just “getting older” so I feel awful that they have to take care of me like this. I don’t know what I would do without them, they are my everything (besides Jesus)!

  • My parents are my heroes. About 3 years ago, I was diagnosed with Fibromyalgia. At the time, I had already been working for my Dad for several months and for the 3rd time. For a while, despite some flares that required some time off, I managed a decent work schedule.

    Until recently, anyway, when my symptoms just got worse and worse. This year, I went from working full time, to working part time, to working whatever time I could manage to going on disability. Despite this unreliability, Dad kept my job and kept my health insurance.

    Mom has astounded me this year. Despite struggling with depression, going through a divorce, homeschooling 4 children (that would be 4 of 8), working, and being mother to 6 kids at home, one with autism and one suspected of aspergers, she still finds time to take me to doctor appointments, get meds, take me to the store since I can’t drive myself right now.

    I know my parents are proud of all I can accomplish despite this obstacle, but the truth is, I doubt it would be possible without their help.

  • Diane

    I come from toxic parents; an abusive father I didn’t even meet until I was 9 and a mother who oozes negativity. At six my pain was ‘growing pains’, at thirteen it was juvenile arthritis and questions of why all the anti-inflammatory meds didn’t work. At fifteen I had my first thunderclap migraine as I dove into a swimming pool. I blacked out and almost drowned. Later that year I had a migraine so bad it lasted 33 days and all I could do was lie in a dark room and scream into a pillow. My mother fought my high school vice principle when he wanted to kick me out of school for missing so much time, and she took me back and forth to doctor appointments, but I could feel her doubt, that she thought I was faking or trying to get attention, and then came the shrinks. I got married when I was 16 to get out of that house and away from my parents. I was finally diagnosed with severe fibromyalgia and chronic migraines when I was 30. I severed contact with my father at 16 when I put him in prison for molesting me. My mother, who is very religious, kept telling me for years to keep praying for healing. I finally told her that God said no, and that she needed to accept that I was sick and that wasn’t likely to change. Every email, letter, and phone call with her dripped with negativity and blame for everyone but herself for everything bad that happened in her life. I began to dread every contact, and haven’t spoken to her for the past two years. Those of you who have supportive parents are blessed. I have always feared that my children would get sick like me; that I have bad genes. Two of my sons battle bipolar disorder, just like their dad. My youngest, now 17, has started getting migraines, and that kills me. But they have the support from me that I never had. And I find support here.

  • I was diagnosed with Systemic Lupus at the age of 17. That was the first time that I ever saw my father cry. Now it’s almost 13 years later and I also deal with scleroderma, raynauds, ILD, pleurisy, etc. Through it all I’ve always been able to rely on my parents. They are my biggest support system. I too have wondered what they went through and still go through watching their child go through pain. As a mother myself now, I know I would do exactly what they did for me. I would look for anything to make her feel better. Try to find that “cure” that’s in a pill. Do anything I possibly could to take her pain away! Thank you mom and dad! You will never know how blessed I feel to have you by my side. Love u!

  • Beverly

    I have to say my parents are wonderful!!! They have three girls and every one of us is ill with autoimmune – myyounger sister and I have lupus and fibromyalgia and my older sister has chroans disease. My parents are the best. Mom has researched our diseases over and over and they help us do anything we need. While myyounger sister and I live 12 hours away my folks come and see us a couple of times a year or whenever we are really sick. Our family tries to use humor and compassion to keep our sanity but our fabulous parents are at the center, giving all the time. I can’t count the number of phone calls that fly back and forth.

  • Rachel

    wow, I have felt this since the day I saw the rash on my arms, till today more than 6 years later. I was the kind of child, who at 19, didnt want to hurt my parents by telling them what was going on, or by making them come with to appointments, because, hey, its bad enough I had to suffer, why should they also!!!

    I see now it was a mistake. I see now how much easier it would have been for them if they would have known the misdiagnosis of cancer, or the times when the drs were horrid to me because “your file cant possible be that thick at this age”

    If they would have known, they could have held my hand, and felt a part of what was going on. Instead, they stood on the outskirts, scared to ask if all was ok at the dr, scared to say to too much because they didnt want to overstep the mark…

    WOW, parents are amazing is all i can say….

  • My mother is my hero too. She’s never given up helping me to find an answer and continues to be my caregiver while my hubby is at work. It must take so much strength to be a parent of the chronically ill.

  • Michelle

    I think about what my parents are going through every day dealing with my chronic severe asthma. They moved closer to me to be able to take care of me and my family. They watch me struggle to breathe. They watch me in the hospital taking massive amounts of steroids and nebulizers every 2 hours. They stay overnight to help me take care of my daughters. They take me shopping or do it for me. They take my daughters to all of their “activities” and make sure they can get to and from school.

    They watch me struggle with depression. They help financially when they can.

    My mother is in denial about the “chronic” form of my illness and tries to keep telling me that I’m going to get better. My dad is more realistic and goes to every doctor appointment with me which is over an hour away.

    My oldest daughter has Sensory Processing Disorder and is in the process of being diagnosed with ADHD. She also has asthma and chronic croup. It is terrible for me to watch her struggle to breathe so I have an idea of what it’s like for my parents.

    Many of us chronically ill rely on our families and I for one know how blessed I am.

  • Lillian

    As the child FINALLY diagnosed at 15, after suffering for years and being told by the pediatrician that I was “impossible”, it was a relief for more than my parents when I was finally diagnosed with FMS/CFS. I’d already been diagnosed with other hereditary conditions (thank you, genes!) but now that we *KNEW* why I was sick all the time, in pain all the time, and sleeping like the dead, my diagnoses provided a release. I know I speak for my parents when I say that the diagnoses was the best thing that happened to me – if one could say that such a thing is a good thing – because now we could embark on a healing process and a learning process. I’ve always been super close with my parents (I am now 25, a Ph.D. candidate, and I talk with them on the phone several times a day), but learning to manage my fibro / CFS as a team was wonderful. I know how frustrated my parents were and still are sometimes, because I remember the yelling and the tears we shared, but overall I am stronger for my parents’ support and in turn, I’ve made them stronger, too. They are role models for me and I am a role model for them; I haven’t let the crap that I deal with on a daily, monthly, yearly, hourly basis derail me on the large scale from what I want to do with my life (although there are my bad days when I stay in bed and eat chocolate all day) — and part of the reason is because of my parents.

  • I think about this regularly as well. I have Fibromyalgia and Vasovagal Syncope; needless to say the past ten years have been difficult for my entire family but I wonder how much of a burden this is for my parents, especially my mom. Besides pushing for the best life that I can have, I also push to make sure that they always know how grateful I am, to remain open and honest with them and of course, that they know my love for them.

  • I am the parent of a chronically ill child – well, teen. She was born with a rare metabolic disorder called Maple Syrup Urine Disease, and is currently awaiting a liver transplant. Over the past 13 years, I’ve felt guilt, anger, and frustration. But more than that incredible love.

  • if you got along with your parents, i’m sure life would be different, but i have never got along with my parents. i’m fairly sure that at least part of the reason i have never got along with them is because, when i was very little – no more than 5 years old – and before asperger’s syndrome was a recognised condition, i remember overhearing a conversation between my parents and a doctor who had been examining me which contained whispered references to autism. i never knew what they were talking about, and my life proceded relatively normally, although i quickly realised, once the first of three younger siblings was born, that i was the “crummy child” – an epithet that i was stuck with until i moved out of their house when i was 18.

    but it wasn’t until i was almost 40, and had lived apart from my parents for many years, before i was actually diagnosed with asperger’s, and by that time, any treatment that i received would do little good.

    i’m sure that my asperger’s wasn’t the entire reason for their naming me “crummy child”, and i admit that i got in trouble a bit more frequently than my siblings, but things would have been substantially different if they had resigned themselves to the fact that i was different, and dealt with it, instead of demanding that i be like everybody else and punishing me when i wasn’t.

  • I’m sure it isn’t as horrible as being the child with the problems, but I can assure that it sucks. All of the hopes that you have for your child are changed. My little one had just turned 6 when diagnosed with JA, but over time we eventually found out that she has MCTD with dermatomyositis, Raynaud’s & scleroderma features. She’s 9 now. I see her struggle, I see her in pain, in her wheelchair some days and if is so frustratingly wrong! You cry a lot. A LOT. And marvel at how amazing she is, how brave & strong she is, and determined. How blessed you are to have a child so sweet and caring. But I have no idea how she feels. I have some good ideas, but I can’t know for sure. I found that most of us mom’s are very vocal. We’re ticked and we want the world to know! No amount of aspirin, Motrin or herbs is going to take this away, & we’re tired of the “helpful” comments that people who don’t understand throw out like it’s no big deal. Grrr! Yeah, it sucks.