What To Do…

Getting a diagnosis of any type can be a mixed bag of emotions, a pic’n’mix of sweet and sour. The sweet relief of finally having an answer, but it may not be the answer you wanted. It may not even be an answer you understand. Unfortunately many people get given a diagnosis and sent out the door with a medical plan and what feels like little or no support. Many people will go home feeling uncertain, nervous, confused, isolated. Below is a guide on how to navigate a new diagnosis that will set you up to be well-informed, know how to self-advocate, how to get support and where to find the help you need from external resources and charities.

01 — EDUCATE

The first step is to educate yourself. Learn your condition from the right places. This bit is key - not ‘Mrs XBDiagnosis’ on a social media support group who has no degree or formal qualification. There are some fantastically well educated advocates out there who have done extensive research and become pseudo-experts in their field. Use them with discretion, because not all know how to review the evidence they find to know what is accurate and reliable, so step with caution. Some can be fantastic and a good start for finding out the basics and accessing support groups. Find medical-led, reputable sites, accounts and sources of information from charities as these are usually reliable. Learn what your diagnosis is and what it means. Then step back and reflect.

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 allllll the options (theoretically they should outline the main ones). But do your research. Know what you’re aiming for, and always ask questions.

02 — Learn To Advocate

Once you’ve established where you are with your new normal and what you want to achieve, you need to now navigate a new relationship - you as a patient with your healthcare providers. For some this means having a hat on that becomes professional patient. It’s tiring, infuriating, but it is also again, life saving. Knowing when to be able to advocate for yourself the right is important. It is absolutely ok to ask questions, do your research, speak out when you’re unsure, ask for a second opinion. This is your body. So long as you’re polite and respectful, asking questions and ensuring you’re fully informed of your options you should get the best outcome from the system that is ultimately there to help you.

03 — Support

The next important component of this journey is support. Support Support Support. There are some aspects of life with a diagnosis that mean 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 hurdle of navigating a chronic illness is your mental health and one of the biggest factors to this is the isolation that can arise. Find support groups online; this does not mean people sat around feeling awkward in a stuffy hall with cold tea and biscuits moaning about their problems. This means new amazing friednships with people who get it and can bring out the best version of you and empower you and teach you how to thrive and live life well, because they get it.

05 — Find Messages of 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 your. Do some soul searching for what brings you joy (hint, it’s usually the little things) and focus on what brings you joy. 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 on the challenging days, and teach you a new way to embrace life and find strength at times when you never knew you had any.

06 — Emergency Toolkit

You’ll need an emergency toolkit. A person, a quote, a focus of hope, physical comforts and a plan. The person who becomes your go-to for moral support. 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 (and may even get frustrated that they aren’t giving you what you need) so tell them when well, so they can deliver when you need it.

07 — 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.

When things change? Repeat the cycle above.