Are you waiting for answers to your unexplained symptoms? Then you might have scheduled a….
Diagnosis Day – words used to describe the day you meet with a Healthcare Professional to receive the results of extensive testing with the hope of receiving answers and a path forward.
Every single Diagnosis Day for me has elicited similar feelings – I wake up early in the morning, giant pit in my stomach and I’m unable to eat. I’m wrecked with anxiety and nervousness.
Ideas rush through my head – “What if it’s this? What if it’s that? Will that mean that I have to do this? Omg, I CANNOT do that! But what if I have no choice? What if it’s not ANY of those things and it’s something else entirely?! What if the doctor says it’s NOTHING! 😱”
I have found that some people are able to approach a Diagnosis Day from a position of faith and comfort. They don’t experience anticipatory anxiety.
While I am working on reframing my ruminations, it’s still really hard for me when I’m about to meet with a doctor and potentially be given a diagnosis that could change my life entirely.
I find that preparing for these types of appointments (1) gives me some sense of control and (2) ensures that I walk out of the appointment with *hopefully* a clear sense of direction and all of my questions answered.
If You Have Symptoms that Don’t Yet Have a Diagnosis
Take a look at Get the Most Out of Your Primary Care Doctor’s Visit for some ideas on how to begin having your symptoms evaluated.
If you’re eager to get support finding your next step, I offer an Ask an Advocate session designed to bring you clarity, develop your capabilities and grow your confidence so you feel empowered to navigate your journey on your own.
Preparing to Receive a Diagnosis
Some of the most stressful days of my life have been spent waiting for results.
School test results, big standardized test results, health-related results, or the anticipated news of results of someone I love, WAITING FOR RESULTS IS HARD.
It’s really easy to let the mind take over and take you far away from reality. Sometimes that can look like thinking up all of the absolute worst things that can happen or it can look like denying reality and escaping into a dream world.
Both ways are your mind’s way of coping and should be appreciated and not shunned.
There is NO wrong way to wait.
In my mind, there are only more and less comfortable ways of waiting and you have to find something that feels comfortable to you.
Finding the right level of activation – the middle ground between too much planning and anxiety or too much collapse – is an important part of the process of waiting. Channel Grounded Emotions to Create Real Change is good read for some general tips on how to better manage emotions while waiting.
If You’re a Worst Case Scenario Person
Researching, investigating, looking into everything, thinking up every permutation of what could potentially be the diagnosis and playing the “what if” game can feel really good to some people.
It can bring a sense of control to a situation that realistically, has very little.
It also can quickly and easily add even more stress, more overwhelm and more confusion to an already challenging situation.
It also may be entirely unnecessary as you could be absolutely fine and will have spent valuable time and energy going down a rabbit hole you into which you didn’t need to venture.
If You’re a Dream World Person
It can be really nice to take yourself away from where you are right now.
Being in a waiting period may feel really uncomfortable and fleeing into the future or a dream world or collapsing into denial or apathy may help numb out some of the discomfort of waiting.
While not thinking about the diagnosis right now absolutely has its advantages, by not confronting the potential reality of a life-changing diagnosis you give up the ability to prepare and potentially self-advocate during the appointment when you receive your diagnosis.
By not emotionally and mentally preparing for the appointment, you may be too surprised and too overwhelmed during the appointment to guide the conversation and get the answers you need in order to feel confident about next steps.
How to End the Overwhelm and Prepare All Parts of You to Receive a Diagnosis
Feeling empowered with information, knowledge, tools, and resources reduces feelings of vulnerability that often surround being sick or unwell.
By equipping one’s self with an idea of what might be coming, it can ease the power differential often felt between people and their healthcare provider. If you have a solid foundation of information, you might feel less surprised or overwhelmed when the doctor gives you a diagnosis.
Good places to visit for information at this stage are diagnosis-specific association or support groups. These can be places such as American Heart Association for heart disease, American Diabetes Association for diabetes, various cancer-diagnosis specific sites and many others for a whole variety of diagnoses.
These sites tend to offer very specific information tailored to one particular issue. As such, they tend of have more up-to-date research and information.
Keep in mind, however, that often these sites receive a large amount of funding from pharmaceutical companies and therefore can be biased toward medication and surgical interventions.
Another place to look is the American Academy of Family Physicians Clinical Practice Guidelines. I really like the Academy of Family Physicians because they cover a broad range of health topics and provide evidenced-based information and resources.
When perusing these sites and others, be sure to save any links that you find to review later. I like to use Pocket or set-up a free email address for links only.
Using a browser bookmarking tool could also work if you generally use one internet browser (Firefox, Chrome, Safari) as it can be difficult to sync bookmarks between browsers.
I also like to keep a small notebook with me to record my questions and take notes. You could also do this in your online calendar’s appointments notes section so that you have it ready for the appointment. All you have to do is find the appointment entry on your phone during the appointment, open it and you’ll have your notes. This assumes that you will have internet access.
For me personally, I generally make a mess of my thoughts on paper and then transfer a cleaned-up version to my calendar appointment entry. Or I’ll just quickly sum up my questions on an index card and bring that with me to the appointment (I like the size and durability of an index card over paper).
Finding a Balance Between Preparation and Nauseation
While there is definitely a certain amount of prep work that can be helpful, productive and empowering, it’s really easy to cross over into creating more worry, confusion, doubt and fear.
An exercise that has completely changed my life and helped me deal with the underlying fear in a lot of healthcare situation is The Hendricks’ Institute and the Foundation for Conscious Living’s Fear Melters®
They have a great video on their site explaining the movements but in general, there are 4 different body movements that correspond to the 4 types of fear: fight, freeze, flee, faint you can do to really help you get in touch with and experience your fear…
…fear that there might really be something wrong
…fear that the tests won’t show anything wrong
…fear that you can’t be helped and you’ll feel unwell forever
…fear of embarrassment, remorse or shame (fear of feeling tough feelings)
…fear that you wasted a whole lot of time, money and emotional energy for nothing
…fear that your journey into a new chapter is just about to begin
Sitting with your emotions, listening to them, and processing them in my opinion is one of the best things you can do to prepare yourself to receive a diagnosis.
There is no such thing as a bad or wrong emotion. They are just energy in motion (e-motion) and need to find a way out of your body through experiencing.
Grounding exercises are also incredibly helpful during this waiting period.
So is getting exercise in or light movement, connecting with nature, sensory experiences (smells, sounds, tactile).
For some other grounding exercise ideas see Healthline’s 30 Grounding Techniques to Quiet Distressing Thoughts.
I also have used essential oils or perfume on my wrist to help ground me during the appointment. Sometimes adding a penny to my shoe, a small rock to my pocket, or heavy jewelry can help give added feedback if I anticipate really needing help staying connected to myself during an appointment.
If you find yourself still struggling with your feelings, a mental health professional can be a great resource to turn to for more support.
I’ve found that Licensed Professional Counselors (LPCs) and Social Workers offer a great variety of modalities to help support emotional processing and regulation. They also will have lots of tools to help anxiety such as Cognitive Behavioral Technique (CBT), Strengths-Based Therapy and even EMDR if there’s a history of trauma.
Psychology Today has a great directory of providers and your health insurance online portal would be another resource to check for in-network support.
If maybe you’re looking for just a little bit of extra support, a book I really like that has been an excellent companion for these waiting periods in life is Byron Katie’s A Thousand Words for Joy: Living in Harmony with the Way Things Are. While I’ve read it cover-to-cover, I find that just flipping through it, opening a random page and reading it can bring me a lot of wisdom and comfort.
Organize and Prepare
Even if you believe that the doctor will have all of the test results, get copies for yourself and bring them to the appointment. You will also want a list of your questions – either electronically or on a piece of paper (I like index cards).
You will also want to be clear on what you are looking to get out of the appointment (your objectives).
This could be answers to your questions, a next step, a better understanding of your diagnosis, treatment options, a discussion on what else may be causing the symptoms the results come back inconclusive or normal.
Anyone else attending the appointment with you will also need to be clear on these objectives and be ready to support you in getting them met.
Check out Get the Most out of Your Primary Care Doctor’s Visit for more in-depth tips on how to prepare and lead a medical appointment.
The main goals of preparing for your Diagnosis Day include:
- Get clear on your questions
- Know what information you need from the Doctor to have confidence in your next step
- Feel emotionally regulated and empowered to self-advocate for answers
Bring a Friend
Diagnosis Day appointments can be incredibly emotional, and even with lots of tools and resources, it can be hard to stay focused. Consider bringing someone to the appointment with you who may be less emotionally invested in the appointment.
Some Board Certified Patient Advocates do attend medical appointments and can be a great support in these types of situations.
Make sure anyone who comes with you understands your goals for the appointment – what do you want to walk away with.
After You Receive a Diagnosis
Breathe. Take a deep breath and ideally move some part of your body – could be your toes in your shoes, your fingers, shrug your shoulders. Wiggle your butt a little side-to-side in the chair, reposition yourself, or shake out your legs.
If that’s hard to do, look around the room and find three (3) things that are a certain color and name them silently in your head.
If you need a second to absorb the words and the doctor is continuing to talk, ask for a moment, say “Thank you so much for telling me, I need a moment to process what you just said and gather my thoughts.”
Next, turn your attention inwards: You might be feeling A WHOLE LOT of different emotions all at once.
- Sometimes there could be relief in that you finally have an answer, even if you don’t like it.
- Or ecstasy or joy because you’re actually told that you’re okay and don’t have the diagnosis which can very quickly turn into guilt when you realize that other people do; and the “why did I not have it but others do?”
- Maybe anger that it took you so long to arrive here, that some part of you knew something was wrong and that you “should” have gotten it looked at sooner (shoulds are not reality!).
- Guilt that the proposed treatment may cost a lot of money, cost of lot of time, place a burden on people you love and care about.
- And likely many, many others.
Acknowledge all of these various thoughts (I hear you thoughts, thank you) and ask them if they can come back later. Tell them that you will gladly give them some time to be really heard later but that right now you need space.
Take another deep breath.
Hopefully by this point, your mind is clearer and you’re grounded in your body. If not, continue with the breathing and moving your body until you’re present and centered.
If you prepared for your Diagnosis Day, then begin to ask your Healthcare Provider your questions and dive deeper into the conversation with the objective of getting your next step.
If you didn’t get a chance to prepare and you’re still with your Provider, use Ask me 3, an Institute for Healthcare Improvement tool for better understanding your next step.
- What is my main problem?
- What do I need to do?
- Why is it important for me to do this?
And I personally like to add – What is the ICD-10 code for my diagnosis?
If you are no longer physically in a room with your provider, ask at the checkout desk for online portal access if it’s available.
You can reach out via the portal and ask them these three questions. Sometimes they might respond, other times they may ask you to schedule a follow-up.
If the provider doesn’t have an online portal, or you are unable to get access, see if you can schedule a follow-up appointment to discuss your questions and/or concerns. Virtual or telehealth sessions are great for these kinds of appointments.
Now that you have your diagnosis, you can also do a little bit more research to prepare and plan for this next meeting.
Processing Your Diagnosis and Connecting with Resources
Before you leave the Doctor’s office, make sure you have online portal access to secure message your provider (you very likely will have questions!). You can access the portal to get your test results, notes from the appointment, and copies of everything to get a second opinion if desired.
If there were any recommendations for intensive treatment options or the diagnosis was arrived at after a process of elimination or there are any other concerns over whether it’s the correct diagnosis, you may want to consider a second opinion.
Second opinions can be really helpful because they can either: confirm the diagnosis, offer a different diagnosis, explore alternative treatment options OR just make you feel better.
Sometimes getting someone else’s perspective, hearing them explain and describe things a different way or just having a different approach to the same topic can bring a tremendous amount of clarity and improve your confidence in deciding what the next step is for you.
The cost of second opinions can absolutely a factor (though insurance should cover it) so if you’re already feeling clear and confident in your next step, there is no requirement for a second opinion. I just find them personally very helpful.
Researching Your Diagnosis
As mentioned the in preparation section above, diagnosis-specific websites/associations, Verywell Health and Healthline are all good sites to visit for more information on your particular diagnosis.
One thing to look for on a health site is the HON certification. HON stands for Health on the Net and indicates that the website has had its content reviewed for quality, neutrality, transparency, and more.
The American Board of Internal Medicine Foundation whose mission is to advance medical professionalism and to improve the quality of health care, has perhaps one of the best resources for patients with a new diagnosis – their Choosing Wisely guide. This guide can improve conversations between patients and providers because it is one of the only resources to take a look at the cost of interventions and their potential benefits to help patients make informed choices about their care plans.
Clinical Guidelines, Standards of Practice and Standards of Care are additional places to look that can be really helpful guide for what happens next after your particular diagnosis. These standards are created by the Boards that govern doctors with particular specialties. One of my favorite places to go is the American Academy for Family Physicians as they cover a broad range of health issues and diagnoses.
The American College of Physicians also has practice guidelines which cover a broader range of adult-only Internal Medicine topics.
You can use these clinical guidelines to ensure that your Healthcare Provider is following practice standards and to get a better idea of potential next steps and their possible costs. For instance, if some of the practice guidelines suggest trials of certain medications or imaging studies, you can reach out to your insurance company and ask about coverage.
Working with an Advocate who specializes on researching diagnoses can be really helpful. You may already have access to such an advocate through your employer – see if you do at Health Advocate.
If not, there are independent Advocates who specialize in doing medical research. Message me and I’m happy to refer you if you’re interested in this service.
Talk to Your Health Insurance Company
One of the first calls you’ll want to make after receiving your Diagnosis and proposed treatment plan is to call your insurance company and ask for an Estimate of Coverage. You will need to provide the ICD-10 code of the diagnosis.
When you call, also ask if that diagnosis qualifies for Case Management support and if it does, ask them to assign a Case Manager. These are usually Registered Nurses who will help you coordinate your care with your insurance benefits. You may also be assigned a Case Manager through a hospital if you are hospitalized but insurance-based Case Management can handle all aspects of care.
These Case Managers can be a huge advocate to help overcome insurance roadblocks. Keep in mind, however, that they do work for the insurance company and may not be able to help you with any appeals or overcoming insurance denials.
If you encounter insurance denials, there are independent Advocates who can help you work through the appeal. I’m happy to refer you to an Advocate who specializes in this if it’s ever needed.
If you encounter push-back from your insurance company (they may ask for CPT codes), see if they can provide you with the company’s coverage policy statement. Usually, insurance companies will have general policies of things they do/do not cover for certain diagnoses.
To get the specifics for your health insurance policy, you will also need to ask the insurance company for your Health Insurance Plan Document which outlines all of the terms and conditions for your specific policy. This is the policy’s fine print and the document can be a great reference to have when you are reviewing treatment options and their potential insurance coverage.
Not all health insurance policies are required to provide the Plan Document, however, so if you do not have one, ask if the insurance company if they can at least provide you with a list of the exclusions for your plan.
Talk to Your Employer’s People Operations/Human Resources Department
If your Diagnosis Day includes a lengthy treatment plan or will impact your workday in any way, it could be helpful to start conversations with your Human Resources Department.
They might be able to direct you to other benefits that can help, discuss alternative working arrangements to support your care, and begin the dialogue regarding your legal rights.
You are not required to share any medical information with them. You could ask about the company’s medical leave policies, qualifying for short-term or long-term disability, Family Medical Leave Act and accommodations under Americans with Disabilities Act.
With that said, sometimes giving a little bit of context can be helpful in negotiating accommodations.
Planning for Treatment Discussions & Next Steps
One of the first places people often turn to after a Diagnosis Day is Google, followed by social media.
Both of these tools can be incredibly helpful and illuminating… AND they can create a lot of additional stress and anxiety.
My biggest, #1 suggestion to do BEFORE you dive in is to: sit and write down all of your questions.
Think of the internet as a magic crystal ball and approach it with a healthy dose of skepticism. Ask the internet your questions and go through the results looking for answers that you connect with.
Everyone’s journey is different – every single person starts from their own unique place.
Every person has their own relationship with their diagnosis – their own desired outcomes, priorities, and values.
What works for one person, or even what science says works for many, may not work for you and that is OKAY. <3
When you are meeting with other healthcare providers to discuss this information, bring your questions and leave your research.
If you bring stacks of research, you may not have enough time to discuss YOU and YOUR needs.
Use the knowledge and awareness you gain from your research to sharpen and hone the questions you ask. You have a very limited amount of time in these appointments so you want to make the most of them by asking really direct, succinct and high-value, clarifying questions.
If you think you might want to continue working with these other Healthcare Providers, make sure that they share YOUR expectations, priorities, values and desired outcomes. You really want to make sure that everyone you work with on this journey is aligned and on the same page with what YOU want to achieve.
Separately but not any less important, be sure to document your healthcare wishes in the event you become unable to advocate for yourself. Look into hiring a local lawyer to draft up Advance Directives and other legal estate management documents as needed.
Lastly, with all of this said, sometimes there’s no best approach and no right answer. Sometimes it comes down to turning inward, leaning on your gut instinct or connecting with a Higher Power for guidance.
If you’re looking for personalized support in helping you navigate your Diagnosis Day, I offer an Ask an Advocate session designed to bring you clarity, develop your capabilities and grow your confidence so you feel empowered to navigate your journey on your own.