Difficult Diagnosis?

Practical tips to help you through it.

If you are in the midst of a medical karate chop, or are trying to support someone who is, this might help you. (To have a better understanding of my journey, check out my story. It is by no means a complete recollection, but it gives you a feeling for what I went through at 33.)

I had a lot of these realizations in hindsight; which, had I known at the beginning, could have saved myself some missteps. So in hopes of helping you walk a straighter path, here are the random things that I learned along the way, in no particular order except along the timeline of how I experienced them.

*Please remember that everyone experiences grief and trauma in a different way, so I’m sorry if these don’t apply to you. Take what is useful and leave the rest*

The first set are tactical, and I have found that organization saves a ton of time in the long run.

Start one word doc outlining your medical adventure with dates, tests and results, and surgeries/procedures.
Create another with a list of all your doctors, their phone numbers and fax numbers.
And yet another with all of your medications, doses and when you take them.
Make several copies of each and keep them in a folder/binder with some extra paper where you can jot down questions as you think of them. When you are filling out the massive amounts of forms in each office, you can insert those pages instead of writing them all out til your hands cramp. Instead, write ‘see attached.’
Keep an excel of all of the money you spend on doctors, medications, mileage to each (date, doctor, amount). You will thank yourself at tax time if you are going to itemize. I admittedly started working with a CPA when everything went down and even though she was a bit pricey, she also got me a much higher refund than I would have ever gotten through turbo tax.
Appeal everything your insurance denies at least once. Yes it’s annoying and takes up time but even a phone call questioning their decision goes a long way. Often times they deny stuff just because your doctor forgot a procedure code or something stupid.
On that note, educate yourself on you insurance coverage and work-related options. Check with your insurance before tests or procedures to see what you’re likely to pay. If you don’t have insurance, ask at your doctor’s office what they can offer to discount things if you self-pay. If you work in a company/institution/university, your HR department may offer medical leave, and other healthcare benefits, such as Health Savings Account (HSA). Paperwork will be required but it can be very helpful to know/understand your options.
If you are taking a lot of medications, buy multiple sets of weekly pill holders and organize several weeks at a time. I fill them on a day when I'm feeling good and clearheaded and I do a month at once so I know well in advance when I'm running out.

I hope you found value in this. It’s important to note that I went from heart failure (and heart surgery) to backpacking in Patagonia in just about 5 years. Miracles can happen, and I am tring to take full advantage of mine.

What tips have you learned through your journey?

Ok, now on to the bigger and harder stuff.

People will say the wrong thing. A lot. Remember that they mean well. They really want to help, they just have no idea how and often stumble through that by saying something that offends you for no reason. Smile and nod.
At the beginning, allow yourself your whoa-as-me moments. It turns out that having to deal with a disease does not alleviate you from the stupid happenings you encounter in everyday life. BUT they are just that – moments. After those moments are over, you need to pick yourself back up and keep on pushing
It can feel very isolating to tackle a big goal like “become healthier” or “overcome a disease or injury” by yourself. Look to your relationships (family, friends, colleagues) and ask for support. Ask a friend to set you up with a care calendar (not having to worry about dinner on those evenings when you’re heartbroken can make all the difference) AND people usually genuinely want to help and don’t know how.
- https://my.lotsahelpinghands.com
- https://www.carecalendar.org/
It might be helpful to join support groups of others who are going through similar experiences to you – e.g., overeaters anonymous, cancer survivors, brain injury patients, couples struggling with fertility, etc. See what’s available in your local area or virtually/online.
What are your strengths or challenges when it comes to pursuing the health you want for yourself and the medical care you need? What sort of things are you willing/able to take on yourself and what things do you need support in? Think about this early on so that you are prepared.
Have self compassion! You will be tired. all. the.time. Your body is working very, very hard, even if you don’t feel like you have accomplished half the things you hoped. It’s trying to heal you, so be nice.
Your doctors work for you, but it IS a partnership. They should treat you with respect and as a human, return your calls, communicate. Know that it’s ok to find a new one if you are not compatible or to get a second (or third!) opinion just for peace of mind.
You, however, have to make a lot of effort. Rehab if it’s rehab. Change your diet. Quit smoking. It’s your responsibility to meet your doctor 3/4 of the way there. They can’t fix your bad habits and health usually isn’t cultivated solely from a pill.
On the flip-side, it is YOUR body. you don’t have to do anything you don’t want to, even if your doctor recommends it. They are smart, and you should hear them out, but they don’t know you. They are not in your body. Don’t be afraid to stand up for yourself or at the very least, ask questions.
If a doctor tells you that you’ll never {xyz} again, don’t believe them. They have to say for liability reasons, or something. If you want to {xyz} again, you just have to have the grit to work hard and push through the pain. It may take a while, but if you think it’s true, you will be able to do it again. It took me MONTHS to build back up at the gym to where I was physically before I got sick, but I kept pushing, one pull-up at a time.
Consider attorneys when appropriate. Most of us feel a twinge of anxiety just thinking about involving legalities into our healthcare journey, but when it’s appropriate (e.g., personal injury, malpractice), it can prove helpful.
When you start to get better – be grateful! Take some time, and a deep breath to process what you went through. But know that it’s the time when things settle down and you have time to think that it starts to be mentally challenging. I HIGHLY recommend therapy (I think if everyone were in therapy the world would be happier place) and I don’t know where I would be without it. It helps you process everything you don’t realize you aren’t processing. Couples therapy might even be good so that your relationships are able to withstand the blow you just faced. Something like that affects both of you in significant, and significantly different ways. Be kind to yourself, and to your significant other.

~includes additional tips from Sarah T, a long time medical journey-taker and friend.

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