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Workplace Issues WORK LIFE AFTER GENE + DIAGNOSIS

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LouLou26
(@loulou26)
Posts: 1
New Member
Topic starter
 

Hi, I am just wondering if any one has any advice on how to approach your view to work once you have a positive gene diagnosis.  I have a great job, with an amazingly supportive company, but I am now struggling with the work I do and how invaluable it is to my time now that I know my life will eventually change.  I dont want to give up work,just trying to work out how to approach this view I now have about it.   In the scheme of things its feeling like a waste of previous time, but I can't just stop working either financially or mentally.

 
Posted : 22/03/2022 5:40 am
Sue B and at007 reacted
Zani
(@zani)
Posts: 39
Estimable Member Admin
 

Hi @loulou26, welcome to the forum! It can be really challenging to make decisions around continuing with work, telling employers about HD and how to spend time generally after a gene positive diagnosis. What is right for each person will also differ depending on circumstances. It is wonderful that you have a supportive workplace. Whether you have or plan to speak to them about HD or not, could adapting your role in some way or decreasing your hours be an option that may be suitable for you? This link may offer some practical assistance but some of the peer leaders and other community members on here will likely offer some more direct experiences and advice also. Employment & Financial Management | Huntington's Victoria (huntingtonsvic.org.au)

 
Posted : 22/03/2022 9:54 am
Sue B reacted
at007
(@at007)
Posts: 1
New Member
 

In 2019 I found out that I was gene positive for HD.  My Dad also has HD.  I decided to join this forum so I could connect with other people that understand how I feel and provide support to others.

 
Posted : 22/03/2022 4:00 pm
Sally and Sue B reacted
Browneyes
(@browneyes)
Posts: 11
Eminent Member
 

Hello and welcome to you both 

 
Posted : 23/03/2022 5:50 pm
Sue B reacted
Sally
(@sally)
Posts: 25
Member
 

Hi @LouLou26!

I also feel like this! I do like my job, and I am comfortable, but I feel like it's wasting my limited time on this earth. I'd rather be traveling the world for the rest of my day, but that is just not realistic for our family. 

The main thing I try to do is use my "free" time to plan meaningful activities. This could be anything from a family day out or meeting with someone for a coffee or some alone time reading a book in the bath. I try to be extra grateful for even the smaller things in my life, that I can control.

I am also more selective of how I spend my time - 12 hours of kids sport + travel - GONE. Day trips to the bush and finding local bakeries to test out their pies - IN!

Once my "free" time is used for smaller things to fill my heart, I find the work week a little easier. Smile

 
Posted : 10/05/2022 11:24 am
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