NEWLY DIAGNOSED
A toolkit to help provide a starting point when you first receive a diagnosis.
Knowledge is power...
Finally having an answer or explanation can be a relief, but it can also come with questions and fear. Patient's aren't always handed a pack of information on what to do next and often turn to friends or the internet, which can provide confusing information. Here is a guide on how to approach a new diagnosis.
EDUCATE YOURSELF
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. The NHS does provide good information on most conditions, and specialist charities are often up to date with information. Visit our own bank of health conditions for reliable medical-professional checked information.
​
Learn your condition from the right places. There are some fantastically well educated advocates on social media who have done extensive research and become pseudo-experts in their field. Use them with discretion, because they may not have the training to know how to review the evidence they find to know what is accurate and reliable, so step with caution. Some accounts can be fantastic and a good start for finding out the basics and accessing support groups.
​
NEW NORMAL
What is your NEW normal? So you have a diagnosis, but that is not a label that fits all sizes. Everyone is different, and many people have more than one label which means diseases overlap. But right now you need to get intimate again and understand where you currently are with your diagnosis and what journey lies ahead.
What is your goal for treatment; is it quality of life, is it fertility, is it life expectancy?
Or all three? This means then having an understanding of what your treatment options are. Not all consultants will propose all the options (theoretically they should outline the main ones). But do your research. Know what you’re aiming for, and always ask questions.
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.
FIND HOPE
Find inspiration, hope and joy.
It seems cliche, but 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, and teach you a new way to embrace life and find strength at times when you never knew you had any.
EMERGENCY TOOLKIT
It's helpful to have an emergency toolkit. A quote, a focus of hope, physical comfort and a plan. The person who becomes your go-to for moral support or a box of supplies. 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.
CELEBRATE THE SMALL WINS
It seems strange but when things are chronic and challenging, celebrate those small wins because they count. Finding positivity in what feels like a sea of negativity can be a mental boost that you need to get through the next hurdle.
Forgive and embrace your body. 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 be doing its own thing and you feel like you’re losing control, but you remain in control of your mind. 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.
SUPPORT OUR WORK...
DONATE NOW to help thousands of people affected by health issues at a young age.
1 in 3 people have chronic health issues. A life changing or incurable diagnosis at a young age can happen to anyone. We need your support to help grow our services and provide leading support and education across all major health conditions for anyone. Every donation makes a huge impact and goes directly to the work we do.
