Parents in the shadow of illness.

Thank you for sending through your ideas for my next post.
It was extremely hard to choose from, until I came across a response from a mother, and I knew in my heart that this was the one I had to write.
We hear stories of the teenagers and children going through Chronic Illness, Depression and Anxiety, but rarely do we hear from behind the scenes.
So, thank you to https://perfectlyimperfect05.wordpress.com/ for choosing today. I will try my best to do this topic justice.
Please take the time to read her inspirational work.


The first time I was seriously ill and hospitalised, I was about eleven or twelve. I had been complaining of stomach cramping for weeks, nausea and bloating. My parents just assumed it was a mild stomach bug. They pushed it aside. I woke up one night, though, on the floor screaming and my parents rushed me to the emergency room immediately. 
I remember the night clearly. The nurse unveiled the curtain and whispered to my parents, ‘the doctor would like to have a chat to your daughter alone’. I hated hospitals back in the days, just like any other child. They were white, gloomy and terrifying. My parents left the room, and the doctor came in. There was no time for introductions, he just cut to the chase.
“Are you being neglected by your parents?’
’
“Are you being starved?’
”
“Are you being abused physically or emotionally?’
’
My answer was obviously no, but he didn’t believe me, nor did he believe my parents. What we learned later on was that I suffered from severe Irritable Bowel Syndrome, and I was losing weight drastically because my stomach and bowels were holding onto food for long periods of time. I didn’t feel the need to eat.
And, somehow, I ended up in an Adolescent Clinic for children and teenagers who suffered from emotional or physical abuse, with a diagnosis of ‘Borderline Anorexia’. Every meeting I had with my counsellor, I was interrogated about my parents and brainwashed into believing that I was mentally ‘doing this to myself’ or that they were doing it to me. 
And after every visit, I ran back to my parents and told them everything.
Obviously, we didn’t stick around there for long.

I remember speaking to Mum about it a few years later, and asking her if she remembered, and she said it was the worst moment of her life. She couldn’t understand how someone would believe that she would want to hurt me. She said that the most hurtful thing is when someone attacks you for being a supposed bad parent.

When I had Glandular Fever, I remember my Mum feeling so helpless – my symptoms were so severe. I just lay in bed every day and night, shaking with high temperatures and there was nothing anybody could do to help me.
When I was diagnosed with Grade II Oesophagitis, they were broke just trying to keep up with my medical bills, trial medication and diet change.
Then there were the Shingles, twice, which left me bedridden once again. My neck glands had swelled to the size of golfballs, and I had excruciating nerve pain. My Dad tried to make me laugh as much as he could.
When I had my Laparoscopy last year, my body didn’t heal as quickly as it did the first time. She let me sleep in her bed for weeks, as night after night I screamed in pain. She would stay awake with me, and for each time I told her I couldn’t do this anymore, she told me that I could.

So, with a few brief memories there, you would already know that growing up, I have unfortunately always suffered from a low immunity and had DIAGNOSED illnesses. I often wondered if they regretted having me, because I seemed to cause an array of problems for them.
Late last year though, my health rapidly deteriorated. I was so sick, and off work for months at a time and not ONE specialist could find anything wrong with me. I was complaining of vertigo, not being able to eat, nausea, insomnia. I was weak at work and catching virus, after virus. My parents took me to appointment after appointment, and sat with me as every person came back and said ‘your results are all clear’.

There was one night where I cried so hard about feeling like a failure and that nobody (not even my own parents) believed me, that I gave myself one serious blood nose.
My partner was with me at the time, and there was blood all over my bed, his jumper and the floor. I held my hands over my nose, but the blood had trickled down my chin and onto the floor. I had created a small blood spilled pathway from my bed all of the way to the bathroom. It resembled a murder scene. My parents came home in the midst of me crying over a sink of running water, blood stained handprint on the mirror and basin, and my partner trying to soak up my blood from the carpet with wet paper towels. I could hear them whispering as I cried. She just won’t stop crying, he told my Mum. I don’t know what to do. My Mum has never been good with blood, so I clearly remember my father entering the bathroom with a cold flannel and he put it on the back of my neck. I (stupidly) tried to breathe through my nose, and a large blood clot flew straight up my nasal passage and into the back of my throat, making me dry retch. I (again, stupidly) opened my eyes and there in the sink was the same blood clot.
My Dad passed me tissues and patted me on the back. He left and returned with an icepack for my neck, and then went to my Mum and Jason, and I looked into the mirror. My face was covered in blood, which had dried at the corners of my lips and the tip of my nose. My Dad had never been so… hands on with me before. I felt like a baby bird with a broken wing.
I knew it was coming. They sat me down for ‘the talk’.
I had had their support for years, but today was different. I could feel it.
“You need to make lifestyle changes”, they told me.
“How do we treat something that isn’t there”
“We don’t know what to do”
“How do we help you?”
“Eat. Just please eat more. You have to eat more”
“We can’t see you like this anymore”
And just like that, they had reached their breaking point.
Their faith in me had diminished and it was only then that I realised how much suffering they had gone through and how hurt they were. They had been there for me every step of the way. They had mostly paid for every appointment, every medication, waited through every surgery, procedure and test. They had sat beside me and experienced the same sickness in the pit of my stomach when each practitioner told me they had no idea what was wrong with me. They dragged me along in shopping centres, because I was too dizzy to walk. They watched me lose seven kgs in less than a month. They watched me lose my dream job, and they saw that my usual confidence had completely disappeared. They cleaned up my blood off of the floor, and face. They drove me everywhere, and took countless days off of fulltime work to accommodate for me; whether it was an anxiety attack, an appointment, a day where I needed someone to help me at home.

I was angry with myself.
I had never once asked how they felt through this.
I had never truly appreciated their help, or guidance, until now.
I realised that we all needed to speak about everything – the symptoms, the feelings.
They were worried that they were going to have to bury me.
I had to make sure they knew this illness was serious, but that I wasn’t doing it intentionally.

And from that day forth, we were all on the same page.
We speak about everything now; every appointment, every single thing that each Specialist suggests. We discuss what medications to trial/not trial. We have an Appointment Calendar so we can work around each other. My Mum has trialled some of the natural therapies with me, and my Dad has actually networked trying to find new trial possibilities. They are continuously checking up on me during the day, and are always telling me not to stress because it ‘makes things worse’.
I inform them of every appointment, and we have received help from family and friends so that I’m not always relying on my parents. I have learnt to cope with the symptoms more independently, so on weekends, they have time to themselves and go on day trips and spend more time together alone. I’m not saying that our lives are even close to normal – because they aren’t. I am still struggling, as I know they are; having to watch me go through this. But things are much better now.
We try not to think of the future much, but if it comes up in conversation, my Dad always says, ‘You won’t be like this forever. Medicine is always growing and one day someone will be able to diagnose you or help you manage this”

I guess we have to hold onto something.

To the parents out there – I am in awe of you and forever will be.
I know now how hard it is for you to watch your child experience something and not have the ability to free them from the pain. Don’t give up hope. Talk to your children. Don’t give up on them, but most importantly, don’t lose yourself in the illness either. make time for yourself and your partner and communicate.

To the sufferers – you can sit back and write as many blogs as you like about feeling alone in your suffering and how your parents don’t understand.
Maybe you need to tell them more than once.
Some parents are in denial – not because they don’t believe you – but because they don’t want their beautiful child to have a problem, let alone a serious one.
Please, try.
And if that doesn’t work, try again.

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27 comments

  1. Communication can be the hardest thing when dealing with mental illness for so many people. There is such a stigma attached that even those who have a good family and support system feel like they need to try and handle it on their own all the time. This can lead to problems and confusion over what it going on, and it becomes hard to see both sides. This is so insightful for a lot of people and I love how you play it out as a narrative. It’s super effective when done like that. I’m glad to hear you have a family who is helping you through this and who you feel so comfortable talking with. Keep fighting the fight. (I see you just replied to my other comment so I’ll bounce back over there haha)
    Seriously, Kudos! Keep writing.

    Liked by 1 person

  2. I don’t know where to begin. I’m typing this through tears. You did this topic great justice, my dear. I am so proud of you (again I don’t know you) for your strength, although, at times you don’t see/feel it. You are an incredibly strong and amazing young woman. The answers are out there, and your dad is right…you will NOT be like this forever. Stay strong, and thank you for writing this and choosing my idea. You are an inspiration to so many. Sending many prayers your way. 🙂

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    1. Thank you, thank you. When I read your email, I had no choice. You definitely hit a spot in me too. I wish you all of the best with your daughter and am always here if you need to talk to someone, or even if she needs to talk to someone. It’s hard, I know how hard it is xxxx

      Liked by 1 person

  3. Your post is very deep and touched my soul how much your parents were there for you every step of the way. My mother and biological father beat me when I was sick… I grew up with an alcoholic, bipolar aggressive father. Not till recently I learnt my mother is an Narcissist. I began to hide it. Take my self to my own appointments. Even when I was wobbly and pale as a sheet. Talking about it was like being afraid if you’d be smacked or told you are weak and pathetic. God bless you honey and your parents that actually understand your illness. 🙂

    Liked by 1 person

  4. I’m sorry you had to go through so much with your parents. I wish things had have been easier. But you have grown as a person and should be proud of that/your independence. Thank you for reading. Your comments are more valuable than you know xx

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  5. I wish you weren’t dealing with such pain and the frustration of receiving the help you need from the medical community. I certainly can understand how it feels to have a child in pain and there is nothing I can do but rely on a doctor.

    Liked by 1 person

  6. My parents continue to struggle with that, and it is even harder when the doctor misdiagnoses us. My parents just don’t know who or what to believe anymore, nor do I. It is a frustrating situation!!! xx

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  7. Hi, I read your post and it was emotional and somehow I could relate to some of it.
    I agree that parents live in denial because they don’t want to believe that their child has a problem.

    To be honest, it’s hard to respond to your post because I had my issues too and with my parents I still don’t know how to make them see and understand that there’s something wrong with me.

    And also because your situation is much worse than mine.

    My parents are not bad parents. They’ve been trying their best, and they’re doing their best according to what they know and believe and I love them so much. I’m trying my best not for myself but for them too. If it were me, I want them to be more open about mental illness and that there are other people that can help me and they can’t, but I need there acceptance, love, and support.

    My problems, they think that we should keep it in the family and that I’m the problem and I can solve it alone, because they don’t think there’s nothing wrong with them.

    Ever since I was a kid, I’m more drawn to the idea of studying people so I can understand them and I can help them if they get sick, so the obvious answer to become a doctor.

    I studied nursing, and one of my professor, once told us that when a person is stressed and emotionally down, it produces physical symptoms in the body.

    Stressed people are prone to ulcers or other stomach problems, as for me, I have GERD, I also have PCOS, Adenomyosis, and Meniere’s.

    So she told us that it will help to do things that will relieve stress, be optimistic, and do meditation.
    I do meditation and optimism, somehow it helped me. I have symptoms of those conditions above.

    As for the mental illness, yes I have problems too, so what I’d do is write and talk to friends who understands what I’m going through. So far writing is also known as a very therapeutic technique for mental illness. And as a nurse, I also tried to help other people. I helped and counselled some people I met in Yahoo Answers.

    Trying to be positive and helping other people, did wonders for me. Of course, I have my professors, and friends to thank for helping me and their love continues love and support for me.

    Be strong, and be optimistic Cassandra! I believe you can do it and from your writing, I can see that you’re a strong person. I hope that we can be good friends.

    If you need someone to talk to, you can talk to me, if you’ll have me as a friend.

    Liked by 1 person

    1. Thank you for reading my post and taking the time to write. I am so sorry to hear about your relationship with your parents, and I hope that one day they will have a better understanding.
      I am also happy you found relief and management techniques.
      I have tried meditation, but did not find much relief at all. I am currently trialling other natural therapies.
      Thank you for your positivity. I am always here if you need to chat.
      Wishing you all of the best X

      Liked by 1 person

  8. Hi Cassie,
    One day we will have to meet up and I’d also like to meet your parents. I teared up reading your post and while out experience hasn’t been as intense or fraught with the search for answers, I can’t tell you what it’s like trying to get your child to eat and she won’t/can’t and you know it’s starting to get to a point where her life might depend on it. My mum described a photo she took of my daughter as looking like someone out of a concentration camp. It is chilling as a parent. I had a friend who came close to dying from anorexia as a teenager and my daughter not eating sent chills done my spine but I could also see that she didn’t have the distorted body image issues anorexics have. She was sick of being small and wanted to grow. After watching her eat sparrow sized meals for so long, I finally did a Google search and wrote in something about being unable to eat much and that’s when gastropareis showed up. I am not bad with the diagnosis stuff.
    I have some concerns about why she has this but at least she doesn’t have diabetes.
    She asks me whether she will always have this and I tell her I don’t know. I am hoping it will go away.. I know chronic illnesses don’t work like that but I’m her Mum. I just want her to be happy, healthy all those superlatives which so many people take for granted xx Ro

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  9. Reblogged this on beyondtheflow and commented:
    If you have been reading my blog this year, you’ll know that my daughter was diagnosed with a rare digestive condition, called gastropresis. This post was written by Cassie, who has the same condition xx Rowena

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    1. I’m just hopping on here quickly to let you know that I’m still here. I would love to meet you! As would my family. Maybe we can share some tips. How old is your daughter? Maybe I can have a chat to her. I know how hard all of this.

      I’m not sure when I’m getting out of here. I currently have a bad migraine.
      I had a lot of tests, spoke to a lot of Specialists and was trialled on a lot of medication…

      I will reply as soon as I get home to your comments! I have read them!
      xx

      Liked by 1 person

      1. Take care, Cassie. I’ve been thinking of you a lot today after reading your posts. My son’s teacher has coeliac and was very, very ill prior to diagnosis. She was fructose intolerant and was bleeding from the bowel from that in addition to the coeliac symptoms. I mentioned you and Amelia to her last week and she recommended getting in touch with the Coeliac Association and maybe we could get a sub-group going there. I’ll get onto it. I am hopeless with follow-through my I’ll email them now before I forget. By the way, last night I found a fabulous A-Z blog set in Japan and the photos are stunning and it might cheer you up. It certainly took me on a journey beyond my own backyard, which I very much needed xx Ro

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