Show Notes:
Download your Free Health History Guide
Transcript: Organizing Your Health Story – From Scattered Symptoms to Clarity
Hello my chronically misunderstood crew. Welcome back to another episode of the Chronically Misunderstood podcast. I was planning to record last week, but this chronic illness journey definitely has its ups and downs. Wow! Last week was a doozy, my energy was low all week and I was in a lot of pain one day in particular. My guess is that it was related to a shift in my hormones. I was reminded again how closely hormones and mast cells are tied together. But today, I’m celebrating a small win — I went to bed super early last night at 8:45 with a nasty headache – I think I was reacting to something I ate yesterday but today I feel much better and that extra sleep gave me a real boost.
On today’s episode, we are exploring how to turn the scattered pieces of our symptom history into a tool that can actually help us get the care we need.
Have you ever walked out of a doctor’s office thinking, “They only saw one tiny piece of what’s really going on with me?” That’s such a common experience it’s almost the norm not the exceptions. There are many reasons this happens – sometimes there isn’t enough time in the visit, sometimes we can’t remember all the details, and sometimes we leave things out so we don’t get told it’s “all in our heads.” Sadly, that’s a very real and valid concern.
But here’s the problem: all our symptoms are puzzle pieces. Without all the pieces, no one can see the full picture. And when providers don’t see the full picture, it makes it much harder for them to help us.
For many of us, our story starts with small signals — little things that don’t quite make sense or could fit under many different diagnoses. We just ignore them and these symptoms get brushed aside. Then comes a crisis — a big event or tipping point — and suddenly, our health smacks us in the face and we can’t ignore it anymore. That’s usually when we start paying close attention. But the crisis wasn’t the beginning. To truly understand what’s happening now, we need to look backward. We need to fill in the missing pieces — how long have we been experiencing fatigue, or congestion, or stomachaches, what triggers our symptoms, and what patterns do we see. Maybe every time we have salame, we have a headache the next day or maybe every time we spend the day at our kids baseball game, we can’t get out of bed the next day. The real goal of tracking is not just to document our history, it’s to illuminate some of the steps on the path to healing. That fuller picture doesn’t just explain how we got here, it can also help us begin to unwind it.
Let me give you a couple personal examples. When my son was born, he spit up constantly. At six months, we tried solids and his body couldn’t handle them — he was gassy and uncomfortable, even though he was growing well. We waited until closer to a year before adding solids but I always knew things were a little off. Looking back, those were early signs. The crisis came when he was just over two and began vomiting — every day for 22 days. That’s when we realized we had a serious problem. But the clues had been there all along we just didn’t know what to do with them.
My own story is similar. Five years ago, I had a major fatigue crash so I thought I had Covid but further testing revealed Epstein-Barr reactivation. Then two years ago, I hit another wall where I could barely function. I had to sit on a stool to cook or do the dishes. I slept and slept and still felt exhausted. Those were my crisis points. But my body had been sending clues for years before that. From an early age, I was a pretty sickly kid. I had ear infections, sinus infections, repeated strep throat infections. I had mono at some point and was just generally not very healthy. In high school I was given antibiotics for bronchitis eight times my junior year. I would get asthma when I got a chest infection and I had skin issues and so on and so on.
All of those little signs, early symptoms, and crisis moments were clues. No one ever really looked at the full picture of my health history to see that there was a long history of immune dysfunction. The doctors only addressed what was happening at the time and that led to symptom management, not real answers or true healing.
Part of why this happens is the structure of our medical system. In the U.S., the average doctor’s appointment is only about fifteen minutes. That’s not nearly enough time to understand someone’s full story. On top of that, doctors are siloed into specialties which works great in certain situations. If I needed heart surgery, I would definitely want a cardiologist with extensive heart knowledge and experience. But for those of us with complex and often chronic conditions, our issues don’t fit neatly into one box. They span multiple body systems and multiple medical disciplines.
Let me give you a few examples of how this can interfere with getting the right care:
You go to see a cardiologist for lightheadedness. They check your heart rhythm and maybe do testing or imaging. But if you don’t mention rashes, they won’t think about mast cell activation.
Or you go to see a dermatologist for repeated hives. They treat the skin, they give you a cream or medication, but if they don’t know you also have gut pain and headaches, they might not connect it to histamine.
You tell a rheumatologist about joint pain. They test for arthritis, but without mentioning brain fog or fainting, they’ll miss possible POTS or autoimmune overlap.
Or you go to a neurologist for migraines. They focus on your head, they prescribe medications, but without knowing you get dizzy after standing, they won’t connect it to dysautonomia.
Has this happened to you? I think it has happened to most of us. The more scattered our stories are, the harder it is for anyone to see the bigger picture.
That’s why I created a medical history worksheet — to help you organize your story. And I recommend treating it as a living document. Don’t fill it all in at once. Add to it as memories surface or as a connection strikes you. Ask your parents what illnesses you had as a child. Remember times you were unusually sick or had odd reactions. Maybe you realize you had mono, remember tick bites, or notice food patterns. All these little things matter.
You ready for a couple of my own random clues? My mom says my toes touched my shins as a baby — hello, hypermobility. I have had multiple chiropractors mention how twisty I am but the word hypermobile never came up. Instead of touching my toes I have always been able to put my hands flat on the ground. I just thought it was a party trick. I had no idea hypermobility would be a driver for pain and something I should really know about before I had any surgeries.
Here’s another one – As a kid, my eyes watered every time I went into a department store, and I still get itchy in clothes that haven’t been washed first. Now I know that my mast cells are very over active and that one way that shows up is that I’m sensitive to the formaldehyde used in fabric sizing.
These tiny clues show I’ve been dealing with issues far longer than the crash I had five years ago. This helps me and my doctors to know that my hypermobility is not just the result of an injury and my mast cells have probably been overactive since childhood. This helps to connect all the dots of my frequent illness as a child and my stressed out nervous system which all contributed to a major crash. I want you to think like a detective and make note of all the strange little clues, all the health related comments you have received – every time you have been called sensitive or different or unusual. Maybe these discouraging comments can be helpful clues.
We are going to build our medical history puzzle in three steps:
First we’re going to write down everything that is currently going on from our current symptoms and their impact, to all the supplements, medications, and treatments we are doing right now. Give yourself a pat on the back for all the hard work you are doing to take care of your sensitive body.
Then, write down everything you remember of your crisis experience. For me, those crashes were kind of traumatic and definitely seared into my memory. But I have realized that no one else really knows what that experience was like, especially if they weren’t living with me. The fatigue and exhaustion and pain can cause us to block out what that experience was like but it’s really important to remember how sick we were at our lowest. Partly this is for our doctors and family but partly this is for us. It can be easy along the healing journey to get discouraged, to think that nothing has improved, but hopefully the trend is actually up. Even with setbacks and hard days we are making progress.
And then lastly we’re going to get curious about any and all hints and clues we can think of from the past and present. To help you gather all the information and the little clues, I have created a free guide for you. You can find the link to download in the show notes. I have created a version you can print and fill out or a spreadsheet version if you prefer to type things in.
Ok. Let me walk you through the pieces I have included. The guide has seven different parts so feel free to use whichever parts are the most helpful to you.
First, in the Daily Function Snapshot, you’ll document your current symptoms and how they affect your daily life. Instead of writing “I’m a little tired,” write “I can’t cook without sitting” or “I need breaks to do dishes.” Since symptoms can be subjective it can be hard for people to understand that fatigue doesn’t mean you need a twenty minute nap this afternoon. When we show how our daily life and functioning is being affected it is easier for doctors and family to understand the level of impact we are dealing with. I don’t know about you but I don’t walk around telling people I am constantly in pain so it can look like I’m fine when I’m not. Or people will see me smiling and functioning at an event or party but I slept all day before and I will need four days in bed to recover after. That is a very different level of impact than I feel tired most of the time.
In the Intervention Snapshot, you can record what you’ve already tried and what you’re currently doing. Many of us have spent years trying medications, supplements, and treatments and it’s hard to keep it all straight. Without documentation, new doctors might recommend things you’ve already spent months on. And in the moment, it’s so easy to go blank when asked about dates or timelines. Everytime I am asked how long I have been taking a certain supplement or medication, I honestly have no clue, that is info my brain just does not store. If you can include when you started and how long you stayed on something, you’ll be able to communicate clearly: “I’ve taken this supplement consistently for six months,” instead of “I think I tried that once.”
Now that we have a picture of what life looks like right now, we are going to go back. What happened when everything changed? What was the crisis moment in your health journey that changed your lived experience? How old were you when things got really hard? Did something in your life trigger this flare? Write your story. It matters!
Now we can start looking for clues. Start by filling in your Health Timeline — the past illnesses, diagnoses, or events that might be connected. I like to arrange my timeline in chunks of time – maybe decades or whatever logic sections of time. For my son because he’s only 11, I listed birth to two which is before his crisis, then two to seven when we were deep in the health struggle, then eight and nine when his health seemed to stabilize, and lastly ten to present when I am noticing a decline in his health. For him that made the most sense because those segments of time were different in their symptoms and profile. For me, because I’m older, I split my timeline into childhood when I had many ear infections, strep throat, sinus infections, mono, and so on, teens and young adulthood when I had non-stop bronchitis, mid-twenties to thirties when I was my healthiest, and then 38 to present when I had my big crash. Now, I don’t know about you but I don’t have detailed medical records from my childhood and I can’t remember exactly when I first had mono but my best estimate is around 10 or 11. What matters is not the exact date but the ballpark timeline. Between mono and five years ago when I was first tested for Epstein-Barr reactivation, I had many, many illnesses. Maybe that EBV was active for a lot longer than the last five years. It’s impossible to know for sure but without a timeline, those possible connections are invisible.
Also to help you prep for your appointments, I included a page for your Questions & Notes, because I guarantee you’ll forget them in the moment which is so frustrating when you have waited for months to see a doctor. And for those who find it helpful, there’s also a Food & Mood Journal and Symptom Tracker.
The more we organize ahead of time, the more confident we feel walking into appointments. Instead of scrambling, you can hand your doctor these pages — and that changes the dynamic completely. For those of us with brain fog or chronic fatigue, this is such a relief. You don’t have to hold it all in your head anymore. These worksheets are especially useful for first appointments or when seeing a new doctor, because they show your story quickly and succinctly and in context.
There are some added benefits to gathering your info this way. One – This workbook can also help outside the clinic. Family members often don’t realize how much we’ve been through or how many things we’ve tried. Sharing parts of this worksheet can give them a fuller picture of daily reality. Two – This can even help if you’re applying for accommodations at work or school, because it documents your lived experience in a clear way.
And three – parents — this can be especially helpful for kids with ADHD, autism, or picky eating. Often, a crisis moment makes you wonder if there’s more going on. This worksheet helps you track not just what’s happening now, but also how things have shifted over time. Has picky eating become more intense? Have sensitivities increased or eased? These details give you and your child’s providers a clearer understanding.
Ok now a little reality check and encouragement for us perfectionists. If you’re feeling exhausted and overwhelmed, remember: you don’t have to fill it all out at once. Work through it question by question, or ask a loved one or caregiver for help. This isn’t a test or a race — it’s a tool. Even writing down one symptom with one example is a great start. Small steps build a powerful record. And if you’d like someone to walk alongside you, that’s one of the things we, as personalized wellness coaches do at Branch Collective Wellness. We help clients sort through their stories and support them as they navigate healing.
This kind of organization isn’t about being perfect. It’s about reducing anxiety and overwhelm, and walking into appointments feeling empowered and clear — without depending on a foggy memory. When you bring organized notes, it shifts the conversation — doctors see you as a partner in your care, not just a patient in crisis.
So here’s my encouragement to you: start documenting, even if it’s messy. Even if it’s just a few notes. Over time, it becomes a tool that helps you — and helps your providers — see your whole story. Because your story matters. And you deserve more than symptom management. You deserve clarity, hope, and the possibility of healing. When our stories are fragmented, we often feel misunderstood. But when we can share the whole picture, it becomes easier for others to see us clearly — and that’s where healing begins.
Don’t forget, you can download the Health History Guide through the link in the show notes. I’d love to hear how you use the guide — tag me on Instagram @branchcollectivewellness. See you next time when we talk about the invisible labor of managing a sensitive body. This is Laura, reminding you that being misunderstood does not mean you’re unseen. We see you and we are walking toward healing together. Bye. See you next time.
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