What I Wish I Had Done When I Was First Diagnosed

Receiving a diagnosis of a chronic and/or mental illness is life-altering. It's tough to think about the future, especially if you have had undiagnosed symptoms for a while and have put all your energy into simply surviving each day.

This is true whether the diagnosis is for you or someone you love (as long as that individual is someone who relies on you for even a small part of their care).

As someone who is a partial caregiver for my parents, husband, adult daughter... and myself, there are several things I wish I had made myself do from the time any one of us was first diagnosed.

Sometime in the last decade, I realized what I should have been doing all along - and I started.

Then during COVID, when we were all stuck at home, I continued.


What I realized was that if I had simply kept up with my medical records on an ongoing basis throughout the years, it would have made it a lot easier now.

I do recognize how hard that is... but trust me, it's very, very worth it.

Currently, I have a document on Google Docs (so that I can access it during an appointment) that lists a lot of the things that are asked when I start seeing a new doctor. I also have one for each of my parents which I print out for them to keep in their wallets.

You might wonder why this is necessary. You might love the doctor you have and simply can't imagine ever going to someone else.

But it will happen - insurance changes, moving, the doctor retiring, a change in the office, and a myriad of other planned and unplanned events that can and most likely will lead to changing or adding doctors at some point.

Of course, this document would look differently for everyone, but this is what I have on mine:

- My legal name and date of birth

- Date of last update

- Social security number, if you feel comfortable doing so

- Health insurance... the company, ID#, and Group #. I also put my vision insurance info and dental insurance info here.

- Primary doctor... name, name of the practice, phone and fax numbers, and the practice's address

- Pharmacy... name, phone number, and address

- Specialists... names of all of my specialists, along with the names of their practices, their specialities and the offices' phone numbers

- Prescription medicines... brand names and generic names, the dosage and frequency, who prescribed it, and why it was prescribed

- Over-the-counter vitamins and supplements (I don't worry about dosage, though there are times it would be nice to have)

- "Not current" list of prescriptions; this is just a time-saver because I've noticed that I might be taken off a med only to try it again later.

- "Things I need to remember"... dates of annual or repetitive tests I need to have done like vaccinations, mammograms, etc

- Surgical procedures... name of the surgery and when, where, and who did it, with the doctor's phone number

The next lists are overkill for most people, but if you have multiple diagnoses, I've found it's much easier to have these written out for those initial appointments and annual updates. 

- Short list of diagnoses

- Short list of major illnesses, like pneumonia and scarlet fever

- Detailed timeline of major illnesses and diagnoses... the name of the diagnosis, year (or date if known) it happened, and a sentence or two about it like what meds were tried or treatments tried

- Summary of family history... each family member, including extended family, with names of their major diagnoses

- Full family history (as much as I can find out)... includes birth and date dates (if applicable) and more details about their health

- Symptoms I deal with... it's pretty obvious, but it's literally a list of all that I deal with

This last part is what I really, really wish I had kept up better. It took going through all kinds of records, including old insurance records, calendars, etc to get as much as I have, but I know it's still not complete. And no, it wasn't just because I'm a perfectionist, I had an incredibly long intake form for one program that asked.

- Medicine history... medicine, dosage (if known), date or approximate date started and stopped, in a timeline by year

- Past doctors... name, name of practice, phone number and dates I used that doctor

- Miscellaneous... I have a copy of the letter I used the last time I needed to find a counselor (again I was asked to do it so I saved it in case I was asked again)

Again, it's really difficult to keep updated when you are dealing with just trying to make it through each day, but from experience, it pays off in the long run.


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