Are you waiting for answers to your unexplained symptoms? Then you might have scheduled a\u2026.<\/p>\n\n\n\n
Diagnosis Day<\/strong> \u2013 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.<\/p>\n\n\n\n Every single Diagnosis Day<\/strong> for me has elicited similar feelings \u2013 I wake up early in the morning, giant pit in my stomach and I\u2019m unable to eat. I\u2019m wrecked with anxiety and nervousness.<\/p>\n\n\n\n Ideas rush through my head \u2013 \u201cWhat if it\u2019s this? What if it\u2019s 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\u2019s not ANY of those things and it\u2019s something else entirely?! What if the doctor says it\u2019s NOTHING! \ud83d\ude31\u201d<\/p>\n\n\n\n I have found that some people are able to approach a Diagnosis Day<\/strong> from a position of faith and comfort. They don\u2019t experience anticipatory anxiety<\/a>.<\/p>\n\n\n\n While I am working on reframing my ruminations, it\u2019s still really hard for me when I\u2019m about to meet with a doctor and potentially be given a diagnosis that could change my life entirely.<\/p>\n\n\n\n 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.<\/p>\n\n\n\n Take a look at Get the Most Out of Your Primary Care Doctor’s Visit<\/a> for some ideas on how to begin having your symptoms evaluated.<\/p>\n\n\n\n If you’re eager to get support finding your next step, I offer an Ask an Advocate<\/a> session designed to bring you clarity, develop your capabilities and grow your confidence so you feel empowered to navigate your journey on your own.<\/p>\n\n\n\n Some of the most stressful days of my life have been spent waiting for results.<\/p>\n\n\n\n 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.<\/p>\n\n\n\n It\u2019s 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.<\/p>\n\n\n\n Both ways are your mind\u2019s way of coping and should be appreciated and not shunned.<\/p>\n\n\n\n There is NO wrong way to wait.<\/p>\n\n\n\n In my mind, there are only more and less comfortable ways of waiting and you have to find something that feels comfortable to you. <\/p>\n\n\n\n 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<\/a> is good read for some general tips on how to better manage emotions while waiting.<\/p>\n\n\n\n Researching, investigating, looking into everything, thinking up every permutation of what could potentially be the diagnosis and playing the \u201cwhat if\u201d game can feel really good to some people.<\/p>\n\n\n\n It can bring a sense of control to a situation that realistically, has very little.<\/p>\n\n\n\n It also can quickly and easily add even more stress, more overwhelm and more confusion to an already challenging situation.<\/p>\n\n\n\n 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\u2019t need to venture.<\/p>\n\n\n\n It can be really nice to take yourself away from where you are right now.<\/p>\n\n\n\n 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.<\/p>\n\n\n\n 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.<\/p>\n\n\n\n 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.<\/p>\n\n\n\n Feeling empowered with information, knowledge, tools, and resources reduces feelings of vulnerability that often surround being sick or unwell.<\/p>\n\n\n\n By equipping one\u2019s 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.<\/p>\n\n\n\n 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<\/a> for heart disease, American Diabetes Association<\/a> for diabetes, various cancer-diagnosis specific sites and many others for a whole variety of diagnoses.<\/p>\n\n\n\n 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.<\/p>\n\n\n\n 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.<\/p>\n\n\n\n I also really like Verywell<\/a> Health<\/a> and Healthline<\/a> for their comprehensive coverage of healthcare topics.<\/p>\n\n\n\n Another place to look is the American Academy of Family Physicians Clinical Practice Guidelines<\/a>. I really like the Academy of Family Physicians because they cover a broad range of health topics and provide evidenced-based information and resources. <\/p>\n\n\n\n When perusing these sites and others, be sure to save any links that you find to review later. I like to use Pocket<\/a> or set-up a free email address for links only.<\/p>\n\n\n\n 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.<\/p>\n\n\n\n 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\u2019s 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\u2019ll have your notes. This assumes that you will have internet access.<\/p>\n\n\n\n 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\u2019ll 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).<\/p>\n\n\n\n While there is definitely a certain amount of prep work that can be helpful, productive and empowering, it\u2019s really easy to cross over into creating more worry, confusion, doubt and fear.<\/p>\n\n\n\n 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\u2019 Institute and the Foundation for Conscious Living\u2019s Fear Melters<\/a>\u00ae<\/p>\n\n\n\n They have a great video<\/a> 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\u2026<\/p>\n\n\n\n \u2026fear that there might really be something wrong<\/p>\n\n\n\n \u2026fear that the tests won\u2019t show anything wrong<\/p>\n\n\n\n \u2026fear that you can\u2019t be helped and you\u2019ll feel unwell forever<\/p>\n\n\n\n \u2026fear of embarrassment, remorse or shame (fear of feeling tough feelings)<\/p>\n\n\n\n \u2026fear that you wasted a whole lot of time, money and emotional energy for nothing<\/p>\n\n\n\n \u2026fear that your journey into a new chapter is just about to begin<\/p>\n\n\n\n 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.<\/p>\n\n\n\n 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.<\/p>\n\n\n\n Grounding exercises are also incredibly helpful during this waiting period.<\/p>\n\n\n\n So is getting exercise in or light movement, connecting with nature, sensory experiences (smells, sounds, tactile).<\/p>\n\n\n\n For some other grounding exercise ideas see Healthline\u2019s 30 Grounding Techniques to Quiet Distressing Thoughts.<\/a><\/p>\n\n\n\n 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.<\/p>\n\n\n\n If you find yourself still struggling with your feelings, a mental health professional can be a great resource to turn to for more support.<\/p>\n\n\n\n I\u2019ve 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)<\/a>, Strengths-Based Therapy<\/a> and even EMDR<\/a> if there\u2019s a history of trauma.<\/p>\n\n\n\n Psychology Today<\/a> has a great directory of providers and your health insurance online portal would be another resource to check for in-network support.<\/p>\n\n\n\n If maybe you\u2019re 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\u2019s A Thousand Words for Joy: Living in Harmony with the Way Things Are<\/a>. While I\u2019ve 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.<\/p>\n\n\n\n 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 \u2013 either electronically or on a piece of paper (I like index cards).<\/p>\n\n\n\n You will also want to be clear on what you are looking to get out of the appointment (your objectives).<\/p>\n\n\n\n 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.<\/p>\n\n\n\n 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.<\/p>\n\n\n\n Check out Get the Most out of Your Primary Care Doctor’s Visit<\/a> for more in-depth tips on how to prepare and lead a medical appointment.<\/p>\n\n\n\n The main goals of preparing for your Diagnosis Day<\/strong> include:<\/p>\n\n\n\n Diagnosis Day<\/strong> 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.<\/p>\n\n\n\n Some Board Certified Patient Advocates do attend medical appointments and can be a great support in these types of situations.<\/p>\n\n\n\n Make sure anyone who comes with you understands your goals for the appointment \u2013 what do you want to walk away with.<\/p>\n\n\n\n Breathe. Take a deep breath and ideally move some part of your body \u2013 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.<\/p>\n\n\n\n If that\u2019s hard to do, look around the room and find three (3) things that are a certain color and name them silently in your head.<\/p>\n\n\n\n If you need a second to absorb the words and the doctor is continuing to talk, ask for a moment, say \u201cThank you so much for telling me, I need a moment to process what you just said and gather my thoughts.\u201d<\/p>\n\n\n\n Next, turn your attention inwards: You might be feeling A WHOLE LOT of different emotions all at once.<\/p>\n\n\n\n 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.<\/p>\n\n\n\n Take another deep breath.<\/p>\n\n\n\n Hopefully by this point, your mind is clearer and you\u2019re grounded in your body. If not, continue with the breathing and moving your body until you\u2019re present and centered.<\/p>\n\n\n\n If you prepared for your Diagnosis Day<\/strong>, then begin to ask your Healthcare Provider your questions and dive deeper into the conversation with the objective of getting your next step.<\/p>\n\n\n\n If you didn\u2019t get a chance to prepare and you\u2019re still with your Provider, use Ask me 3<\/a>, an Institute for Healthcare Improvement tool for better understanding your next step.<\/p>\n\n\n\n And I personally like to add \u2013 What is the ICD-10 code for my diagnosis?<\/em><\/p>\n\n\n\n If you are no longer physically in a room with your provider, ask at the checkout desk for online portal access if it\u2019s available.<\/p>\n\n\n\n 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.<\/p>\n\n\n\n If the provider doesn\u2019t 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.<\/p>\n\n\n\n Now that you have your diagnosis, you can also do a little bit more research to prepare and plan for this next meeting.<\/p>\n\n\n\n Before you leave the Doctor\u2019s 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.<\/p>\n\n\n\n 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\u2019s the correct diagnosis, you may want to consider a second opinion.<\/p>\n\n\n\n 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.<\/p>\n\n\n\n Sometimes getting someone else\u2019s 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.<\/p>\n\n\n\n The cost of second opinions can absolutely a factor (though insurance should cover it) so if you\u2019re already feeling clear and confident in your next step, there is no requirement for a second opinion. I just find them personally very helpful.<\/p>\n\n\n\n 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.<\/p>\n\n\n\n One thing to look for on a health site is the HON certification<\/a>. HON stands for Health on the Net and indicates that the website has had its content reviewed for quality, neutrality, transparency, and more.<\/p>\n\n\n\n The American Board of Internal Medicine Foundation<\/a> 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<\/a> 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. <\/p>\n\n\n\n Medical studies<\/a> using Google Scholar can be helpful if investigating treatment options and their success rates\/outcomes. Clinical trial information can be found on NIH\u2019s website<\/a>.<\/p>\n\n\n\n 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 <\/a>as they cover a broad range of health issues and diagnoses. <\/p>\n\n\n\n The American College of Physicians<\/a> also has practice guidelines which cover a broader range of adult-only Internal Medicine topics. <\/p>\n\n\n\n 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.<\/p>\n\n\n\nIf You Have Symptoms that Don\u2019t Yet Have a Diagnosis<\/strong><\/h2>\n\n\n\n
Preparing to Receive a Diagnosis<\/strong><\/h2>\n\n\n\n
If You\u2019re a Worst Case Scenario Person<\/strong><\/h3>\n\n\n\n
If You\u2019re a Dream World Person<\/strong><\/h3>\n\n\n\n
How to End the Overwhelm and Prepare All Parts of You to Receive a Diagnosis<\/strong><\/h2>\n\n\n\n
Finding a Balance Between Preparation and Nauseation<\/strong><\/h2>\n\n\n\n
Organize and Prepare<\/strong><\/h3>\n\n\n\n
Bring a Friend<\/strong><\/h3>\n\n\n\n
After You Receive a Diagnosis<\/strong><\/h2>\n\n\n\n
Processing Your Diagnosis and Connecting with Resources<\/strong><\/h2>\n\n\n\n
Second Opinions<\/h3>\n\n\n\n
Researching Your Diagnosis<\/h3>\n\n\n\n