NEWLY DIAGNOSED
When given a diagnosis, what next?
You're not always presented with all the information when given a diagnosis. What does this mean, what happens next, what to do? This guide will help you know what to do when finally given a diagnosis.
YOU HAVE THE ANSWER
BUT WHAT NEXT...
If given the chance, try to take someone with you to an appointment where you are likely to be given a diagnosis. Take a friend and/or a notepad to make notes if needed.
Don't feel rushed to leave - if you have questions then ask. For some specialists you may be assigned a specialist nurse who will give you their contact details so you an always return to them at a later date with questions.
But when you get home...then your mind starts whirling and the temptation to google is real. Follow these steps to help guide you on the right path for what to do next.
FIND OUT ABOUT THE CONDITION...
Learn what your diagnosis is and what it means for you.
Find medical-led, reputable sites, accounts and sources of information from charities as these are usually reliable. (look for the PIFTICK for regulated, reliable health information providers!)
The NHS does provide good information on most conditions, and specialist charities are often up to date with information.
Learn about your condition from the right places.
NEW NORMAL
Once you have researched what the diagnosis is you may need to go back to your GP or hospital specialist. The next question is - what can you expect?
What are the aims for treatment - is it to cure or to manage symptoms? Not all treatments are designed to cure, some are to help relieve your symptoms and help you live as long as possible as well as possible. It is important to find out from your team what the intention of any treatment plans are.
TREATMENT
Do you have option? Are they medications or surgery?
Is the closest hospital the best hospital for the care you need? Remember patients can ask to be referred outside of the region.
Establish what you want, what is best for you. This is a discussion that requires you to do some reading and ask the questions with your team.
PROGNOSIS
What does the future look like? Some conditions will get gradually worse, some can be managed. Some will be life-limiting but that can range from months to decades. Ask the questions.
NEW NORMAL
What to expect from what your 'new normal' is will vary. Find community groups for advice, information and support.
SUPPORT
The next important component of this journey is support.
Support Support Support.
Sometimes your pre-diagnosis self isn’t always compatible with your post-diagnosis self.
Friendships may change, or not be able to fully meet your needs in the same way. Bringing into your world people who can relate, advise, provide a shoulder and be a sounding board is so important. This reduces that overwhelming sense of isolation that can ensue. One of the biggest hurdles of navigating a chronic illness is your mental health and one of the biggest factors to this is the isolation that can arise. This means new, amazing friendships with people who understand and who bring out the best version of you, empower and teach you how to thrive and live life well, because they get it.
CELEBRATE THE SMALL WINS
It seems strange but when you have a chronic health problem, celebrating those small wins can be invaluable.
Finding positivity in what feels like a sea of negativity can be a mental boost that you need to get through the next hurdle.
There is a real mental journey to go through when getting a diagnosis. Your body may feel broken, but it doesn’t mean it is. Your diagnosis does not define you. Your body may never be the same as it was before, but it can become something even more beautiful - truly.
Learn to forgive your body, because believe it or not it actually is wired to survive and is doing its best to do so.
FIND HOPE
Find inspiration, hope and joy.
It seems cliche, but finding something to focus on to get you through those difficult days is vital.
Take inspiration from watching the journey of others who have navigated this new and unfamiliar world.
See the messages of hope all around you. Reflect on what brings you joy and put time into concentrating on these things to help carry you through difficult days. This will be crucial to pulling you out of the dark cave that you will inevitably crawl into from time to time, will distract you during the challenging days, teach you a new way to embrace life and find strength at times when you never thought you had any.
EMERGENCY TOOLKIT
It's helpful to have an emergency toolkit. A quote, a focus of hope, physical comfort and a plan for when you are having a bad day/flare.
Communicate your emergency toolkit with your closest person, partner or loved one. That person you can be open to, ask for advice, share your darkest fears who will be that rock and sun to guide you through.
Quotes and words to keep you focused and remind you of what you need to stay focused on.
Sometimes even a physical box to go-to in times of need; chocolate, a candle, bubble bath, a book, painkillers and a self-treat. If you have a partner, show and tell them (when well) what it is you need when you’re struggling, because you may not be able to articulate it when you actually need it.
BE PATIENT, ADJUST & ADAPT
Things can seem very uncertain and the loss of routine, or overwhelming hospital appointments, can throw life into chaos. Be patient. What feels like a loss of control in the short term will pass.
It is important to listen to your body and recognise where you are at physically and mentally. Just because you could do something previously, doesn't mean you won't ever again. But what is important is to adjust, adapt and work with your body.
When you adapt and go easy with yourself, life feels a little bit easier.
Next toolkit...
LIFE AFTER TREATMENT...
When finishing active treatment, or after a long period hospital appointments, tests and medications/surgery...what should be a time of celebration can often come with an anticlimax. A big void, empty space and confusion where you would expect to find happiness and relief. We know, we get it. Our next guide will help...
OTHER RESOURCES TO HELP
ONLINE COMMUNITY SUPPORT GROUPS
Sign up for one of our online community support groups. Live, virtual support sessions with people who can relate. These friendly, safe spaces are brilliantly for being open and honest with people who truly understand.
SUNSHINE SUPPORT PROGRAMME
We have programmes to help you navigate the impact of a life changing diagnosis. A 10-step programme designed by life coaches and medical professionals to help you process where you were, what you've gone through and what comes next.
PODCAST
Sometimes one person's story is another person's survival guide. Our Scars Of Gold campaign shared the experiences of 100 women sharing their lvied experiences of facing their mortality at a young age. Sharing where they found strength, hope and joy.
HELP US TO HELP YOU
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As a small but rapidly growing charity, our services rely on every penny donated from individuals, fundraising and sponsors. Every donation goes directly to the vital services straight to people who are facing their mortality at a young age.
Make a one of donation, donate regularly, sponsor or organise a fundraiser. Every pound goes directly to where it is needed, any health challenge.
DONATE TO HELP PEOPLE IN DESPERATE NEED FOR SUPPORT AS THEY FACE THEIR MORTALITY
Information you can trust...
We are regulated by the Patient Information Forum which means we hold the PIF Tick of approval. This shows that the information we share is reliable and safe.