The shock of a diagnosis – Part 1

The shock of a diagnosis – Part 1

by Lily on August 28, 2010

I have been working on some new posts from my hospital bed and at the moment all the signs are pointing to doing some stuff on the shock of diagnosis. I received an email this week from a new Mum who had recently had her beautiful 4 week old baby diagnosed with CF. As you can imagine, the heartbreak can be overwhelming.

I had a good chat with my own Mum about my diagnosis and how she got through life after hearing those words. Mum has started recording her experiences so that we can do a series for Mum’s who are living through the trauma of a serious health diagnosis for their child. Obviously I have never had a child and have not gone through this experience so I am not well placed myself to be able to share my experience on that matter so I will leave that to my Mum. I am, however, well placed on having had a mother who has battled through a diagnosis and aimed to create a happy and positive child no matter what. I HONESTLY believe that a mother (and father) who guides her child to be a positive and happy person despite their problems is one of the BEST tools a mother can give her child. There is now good medical evidence that shows that a patient with a positive attitude is more equipped to better deal with their health issues than those who don’t have such an attitude. Creating a positive attitude in a child starts with the parents. So I will share with you the words that I shared with this Mum who reached out to me…..

I can only imagine how you are feeling at the moment. I am on the other side of the spectrum, I have never had to go through the sadness of having your beautiful little one being given what feels like a death sentence. It must be heartbreaking. I know the day I was given the diagnosis still haunts my Mum. You have to know that you will get used to the idea of CF, you will have some happiness again, you will be able to create beautiful memories. You will laugh again. There are a few things that you need to know now that will make a difference to both your life and the life of your little angel.

I know you are VERY angry and scared. It is totally natural. And you shouldn’t beat yourself up for feeling like that. You have a right to be angry. But you also need to understand that this is NOT your fault. This is not caused by anything you have “done”. At this time you need to just take one day at a time. When you feel angry, you need to just allow yourself to be angry for that moment. If you just give it it’s place, rather than trying to deny it and force it away then it will lose its hold on you much faster. It is the same with sadness and grief. Just be in the moment, say to yourself, “yes, I am sad right this moment but I will be OK”. Don’t beat yourself up for feeling these feelings; grief, sadness, anger, just acknowledge that you are feeling them, let them have their moment and then keep going. Do something to break the thought. Preferably something positive, something small like making a cup of tea, putting on a song that always makes your happy no matter what, etc. I know it sounds stupid but you will feel happiness again one day. This initial deep sadness and grief will ease somewhat. It is about giving grief and sadness its place while aiming for a positive outlook.

There will always be a some sadness. That is the nature of illness. But the best thing my mother could have EVER done for me is to teach me to be a positive person. It has been the best tool in my fight against CF. When you are sad remind yourself that you are going to be a positive role model for your son, you will show him how to be a positive and happy person no matter what his circumstances. That is honestly the best tool that you can give your son for the future. It takes practice and it is about changing your thought patterns and attitudes but it is TOTALLY possible. You are the best person to teach your son that life is worth living and that you can find joy and happiness in the smallest things. I know you won’t feel like it is possible at this time but it will happen.

As someone living with Chronic Illness, I know that the above information applies whether you are living with Illness yourself or whether you have a loved one or child who has just been diagnosed. It takes time to get used to your new reality but you will smile again.

Mum has written the first half of her post so I will post that very soon. There has been a bit of a delay between posts due to my being back in hospital. I am just in for a much needed tune up and am looking forward to getting out of here very soon. Until then, I am having fun doing some writing for TLWC and I am looking forward to sharing these stories and insights with you!

See you soon!


For more information about TLWC check out the first TLWC post or the ABOUT page.

{ 4 comments… read them below or add one }

Gill August 30, 2010 at 2:29 pm

So good to read your words of wisdom again. I hope the hospital stay isn’t for too long this time. I am doing my nursing studies and find what you write so pertinent to the profession as it gives so much insight on how to approach chronic illness. I have recommended that others in my course read your site to help us understand. Thank you so much for sharing your inner thoughts & feelings.
Good luck with the work/study/life balance.
Hope to see you around Maleny one day when I’m over again 🙂

maren August 31, 2010 at 8:43 am

Lily i wish i was as brave as you …. I look up to you and love you alot
maren xox

tante janny September 1, 2010 at 8:04 am

Lieve lily .Je bent een fantastich mens !!Een jonge vrouw die zo positief op deze wereld staat!! Heel veel respect heb ik voor jou levenswijze.Ik wens jou nog heel veel goede jaren. Tante Janny.

wendy nugent September 3, 2010 at 3:13 am

Dear Lily, What an amazing story which shows the courage of both you and your mother and of course your sister as well.You show such insight into how that young mother is feeling.
The photo of you and your mother brought a lump in the throat. Keep up the positive thoughts and don’t give up!

Leave a Comment