I have been living with chronic conditions, both physical and mental, since I was a kid. I’ve been encouraged to write about it, talk about it, think about it, and then put it all aside and move forward with my life. There’s good reasons for doing these things. Today, I want to talk to you about the power that comes from writing out your own history with your condition, whatever it is, whether or not you have a diagnosis. This can be especially useful in terms of giving you new insights into your condition and in terms of emotionally processing the losses you’ve faced.
You don’t need to share this writing with anybody for it to be useful (though often sharing a version of it with your doctor may help with your diagnosis and treatment), and it doesn’t need to be in any particular form—it could be a narrative, an outline, a timeline, or whatever format most helps you.
You also may write it in a combination of forms. There are no hard and fast rules for this, just whatever will work best for you.
Experimenting is definitely not a bad thing either.
What should you put into a health history?
What I’m talking about is writing out a relatively detailed chronicle of symptoms you’ve had, when you had them, what major life events you experienced, and what treatments (if any) you had and if/how they helped (or worsened things).
As an example, I was diagnosed with gross motor skill issues when I was three or four and participated in physical therapy for it for two or three years.
To this day, my fine motor skills aren’t quite as good as others (my handwriting tends toward illegible because of it), but I’ve adapted by predominantly typing and recognizing that my penmanship is never going to be exquisite.
My hand-eye coordination is a little subpar as well, so I never excelled in sports, but I’m okay with that.
My depression was triggered by death. When a family friend, my art teacher, and my grandmother all died within a few months of one another, I found myself emotionally stuck in the grieving cycle, unable to break out. I was 9 at the time.
For me, chronological gathering of information makes sense – I focus on life events and when and how my symptoms impacted my life.
However you tend to remember or express things is fine, just make sure that it makes sense for you and that you can explain the process to others.
Try to think back to just when a particular symptom started (or when you first noticed it/realized it wasn’t “normal”) and record that, and whether other symptoms or events began before or after it.
Order can be important because there are many progressive conditions, some of which tend to have symptoms in a particular order.
Whatever condition you are dealing with, recording the symptoms, challenge, and how it’s impacted you can really help your long-term health.
Basically, write out:
- Symptoms you’ve experienced
- Major life events (especially health-related)
- Medications you’ve taken
- Diagnoses made (and whether or not you agreed with them)
- Self-care habits (like exercise or diet modifications)
- Mental/emotional state around that time (depressive funk vs. really energetic)
- Type/name of doctors you saw (and how you felt about them)
- Any other details that feel relevant in your case(for example, I focus on emotional state and major life stresses, but you may focus on dietary habits due to allergies/food sensitivities or pain management efforts, depending on the symptoms you’ve experienced or diagnoses you have)
You’re trying to tell the story of your life as it relates to your disability/condition. There’s no one right (or wrong) way to do it, but your goal is to organize your thoughts and give yourself the space to notice the patterns that may emerge, and give yourself permission to process through the emotions involved.
You don’t need to get it all done at once, just do what you can and let yourself go back over things repeatedly if you need to.
Your goal is to get as much information as you can down in one place so you can see the big picture and (hopefully) gain new insights and more useful information to share with your doctor(s) in a (more) organized way than you could before.
How it helps emotionally
Having a chronic or disabling condition can be very emotionally painful. There is often a sense of loss that accompanies your symptoms/diagnosis, and very often there’s the potential for multiple types of trauma as well.
By taking time to articulate what you’ve dealt with and why it is challenging, you’re often creating space for you to really process through what happened and integrate that information into your life.
For some people, just writing out the information can really help get those emotions out, and helps them have a different perspective on their struggles.
Seeing the doctor and crying or otherwise expressing your trauma without being able to give them details makes it hard for them to help.
If you get those emotions out before you see the doctor, you can then share the details that they actually need to hear when you see them.
It also can help you reaffirm what you’re dealing with. You really do have something going on and it really has had an impact on you.
By writing it out and then looking at what you’ve written, it can often help you affirm to yourself that you have been impacted and you’re not making it up.
If you are concerned enough to spend time writing it all out—there really is something going on and you deserve help getting it under control.
Finally, this is a way to help you take control of managing your health. Very often we go through periods of feeling helpless or powerless and uncertain about the next steps to take.
By spending some time and energy recording your history with your condition(s), you are making the choice to better understand things and get out of a victim mentality.
You deserve answers and the best possible treatment. The best way to get that is by taking charge and making that happen.
How it can help with your diagnosis
If you don’t have a diagnosis yet or are questioning the diagnosis you have, writing out your medical history may give you new insights into your condition.
Sometimes, when you write it out like this, you remember the order in which symptoms occurred better, or emotional stresses you hadn’t recognized before.
Maybe there’s a piece of information you hadn’t thought to share with your doctor before (or they didn’t hear) or there’s a medication you tried that wasn’t discussed properly.
For example, part of the logic behind my FND diagnosis was that my symptoms occurred or increased while I was feeling emotional stress.
When my partner Al was eventually diagnosed with pernicious anemia, we realized that many of his early symptoms were things he didn’t bother to mention because he assumed that they were the result of his prior brain injury, rather than symptoms of a new and different condition.
Some symptoms feel mild but are a necessary piece of the diagnosis puzzle, and sometimes doctors choose to focus on particular symptoms because they feel that they can fix them, and ignore other symptoms that they are less certain about how to handle.
By noting down all the symptoms you are experiencing, you may be providing the missing piece that will give your doctor the full picture of the pattern that they need to recognize to confirm your diagnosis.
Often diagnoses are based upon pattern recognition, and for the doctor to see the pattern, you need to give them the full picture.
How it can help with symptom management
Sometimes there are specific symptoms that are particularly frustrating. It’s important to make sure your doctor is aware of them. Often, though, certain symptoms are side effects of the primary condition or the medication used to treat it.
If you start experiencing a new symptom after you try a specific medication, it’s worth examining whether the cause may be the medication you are trying rather than your condition itself. This is an especially complicated issue if you are taking multiple medications and/or have multiple conditions.
While symptom tracking is a very useful tool for this purpose, sometimes it also helps to look into your past and use what you remember.
How you reacted to medications in the past may well impact what medications to try first in the future.
Also, there are times when you happen to do something that turns out to be helpful.
For example, maybe there was a period where you were exercising regularly and you had no symptoms during that time—or a time period where you either ate something particularly often and felt worse, or avoided a certain food or product and felt better.
This can give you a specific management tool to focus on trying to see if it really did help you.
Psychologically, just knowing that you’re trying something can sometimes improve how you feel (this is referred to as the placebo effect), and of course, once you know that something specific helps (or hurts) you, that may help confirm (or disprove) a diagnosis.
A healthy curiosity about what you have, how it works, and how to manage your symptoms can help you really feel confident in your diagnosis (or find the correct one) and improve your quality of life.
The more of an expert you are in how your body works, the better able you are to be a full partner with your doctor in your diagnosis and treatment.
How it can help you communicate better with your doctor
Often, it’s hard to remember all the details when you see your doctor. By writing out your experience, you have an information resource to read from, share with your doctor, and/or help you organize your thoughts or details better.
Remembering what happened first, or what may have been a medication side effect, can help your doctor create a better plan for you than they otherwise could.
Also by expressing your emotions when you write, you’re more likely to be able to explain the issue better to your doctor and are more likely to be able to approach it with less emotion and a more precise explanation.
Doctors are always giving their best guess in the diagnosis, but the better you can paint the picture for them, the better chance they have to see the whole situation.
By being better able to describe particular symptoms, possible cause and effect, and what symptoms have the greatest impact on your quality of life, you and your doctor have a much better chance of managing your symptoms, confirming your diagnosis, and improving your quality of life.
Because doctor’s appointments are pushed to be so short, it’s often very hard to get all the information you need, especially if it’s disordered in your mind.
By writing things out and thinking them through, you can more easily plan just what to tell and ask your doctor, and you can also give your doctor a copy of that timeline or narrative about your history so that you both can refer back to it at future appointments if necessary.
How it can help you better learn from your peers
I’ve written in other posts about the value of communities of people who share your diagnosis. Very often, they can give an inside scoop about doctors who are particularly familiar with your condition (or symptom set) or about medications that have been particularly effective (or ineffective).
While doctor-patient relationships aren’t always predictable, doctors who are particularly knowledgeable about your condition and can communicate it well to patients are more likely to be helpful to you.
By the same token, while medications interact with each person’s body chemistry slightly differently, medications that many fellow patients report good results with is a better place to start than with a randomly chosen option.
Finding others with similar stories and symptoms can help you better connect with your community and feel more reassured that your diagnosis is correct.
If you fear your diagnosis is incorrect, talking to others who share it may help you either feel more secure in your diagnosis or give you some alternatives to ask your doctor about (or do research on your own).
While I feel very secure in my FND diagnosis, I’ve met many folks through FND Hope who question their diagnosis. For some of them, hearing the stories from others helps reassure them that their diagnosis is correct.
For people who may be incorrectly diagnosed, they learn about others’ misdiagnoses and may learn of an alternative diagnosis they can more deeply research.
I’ve learned that FND has overlapping symptom sets with Lyme disease, as well as with Ehlers-Danlos syndrome. For the folks whose doctors guessed incorrectly, they now have alternative diagnoses to research and discuss with their doctors.
Conclusion: Writing up your medical history can really improve your quality of life
Understanding your condition can have a huge impact on your quality of life. The better you understand what is damaged and why, the better you can justify or understand the adjustments you may need to make in your life to live better with your condition.
By describing your symptoms and life events, you can not only gain insight into the progression of your condition but also help yourself to psychologically heal from the trauma you experienced.
Once written, you may want to share a copy of this write-up with your doctor to facilitate communication and help them better understand the chronology.
Understanding that relationship may help your doctor pinpoint your diagnosis or shed more light on understanding the way your particular symptom set plays out—which could help you and your doctor better plan for the future.
Writing it out can also often help you process your emotions, giving you a better chance of clearly communicating with your doctor about your experiences, rather than being overwhelmed by the associated emotions.
Writing it out can also help you with symptom management in the sense that you can then better communicate with your doctor about what symptoms are most disruptive to your life, improving your odds of finding a treatment that helps with what limits you most, rather than having your doctor guess or focus on whatever symptom you mention during that particular appointment.
Finally, by knowing your story, you may know the right details to share or ask about in group support sites, which improves your chances of finding the best doctor, medication, or diagnosis to help you improve your quality of life.
You deserve to feel confident in your diagnosis and treatment, and taking the time to write out your own symptoms, diagnosis, and treatment history may really help you along on your journey. At the very the least, it can take you a step further on your own emotional journey of healing. So why not spend some time today writing out your health history?