15 THINGS I’VE LEARNED THROUGH THE DIAGNOSIS PROCESS OF A CHRONIC ILLNESS

I learned the hard way how to maneuver the medical world when searching so fervently for a real answer to my ever-lasting pain. See my posts about Endometriosis and Adenomyosis.

I made a bunch of mistakes, chose the wrong doctors, asked the wrong questions, didn’t ask enough questions, didn’t know much of anything.

I’m still learning, but I feel a bit more confident in my ability to handle appointments, and I now know when to get up and leave when a doctor is mistreating you – and to know that’s okay, and that it’s not always rude. (I’ve yet to do this, but I wanted to in some instances.)

Here we go:

  1. Ask people around you if they know of any good doctors. This might be tricky if you’re searching for a good specialist and no one you know has been in your shoes before. If so…
  2. Read all the reviews that you can get your hands on about the doctor you’re planning on seeing. If you get lucky and get referred to a doctor, make sure to do at least some research on the new one. If you trust the doctor who referred you, that’s probably a good sign that the new one will be okay (in my experience), but it’s always good to check. Get a sense of their credentials, and stuff.
  3. Dot your I’s and cross your T’s. If you have health insurance, make sure you know if the doctor falls in your specific network for coverage; or if you’re going your own route, get a good sense of what things may cost. Even an estimate is helpful. I made some stupid mistakes and almost ruined things for myself, but now I know better.
  4. Don’t set your hopes high for the new doctor/new appointment on your calendar. This was by far my biggest problem (and still is). Unfortunately, appointments are short, and the medical world is run like a business: they need to get you in and out as quickly as possible. My time with the actual doctor I’m supposed to see averages about 20 minutes. That’s not long at all…
  5. Make a plan for your appointment. Write down your questions, your concerns, where your pain is, when it happens, what triggers it, etc.
  6. If they don’t care, they don’t care. I’ve had a doctor look me square in the eyes and tell me that they think I want to be sick (they didn’t even say “I think”… Yeah, what a great day that was.) I was absolutely furious. If you don’t feel like you’re being treated well, or that you’re simply wasting your own time, it’s okay to leave. Who wants to hear that kind of stuff when clearly there’s a reason why you came to their office? I’m not a hypochondriac, and for the life of me, I do not know why doctors think this is such a common occurrence. Just because “I look healthy” doesn’t mean I am. There’s such a thing as invisible illnesses. *Sorry, mini rant.*
  7. A good doctor should not make you feel as though you’re wasting their time. You scheduled the appointment, took time out of your day, most likely got anxious about it, and you’re footing the bill to see them. You’re not wasting their time. Find a new one if they outright tell you this, or if they make you feel this way.
  8. This one kind of goes without saying, but if you get a bad feeling about a doctor, trust that gut instinct and don’t see them again.
  9. Don’t try the treatment options that are forced at you if you don’t want to try them, or if you feel that they aren’t safe/the right thing for you (your doctor shouldn’t be forcing treatment options, anyway.)
  10. Speak up about concerns you have. Even with good doctors, I’ve felt let down when mentioning a certain issue I’ve had. Most of them either forgot or ignored it. I even went to the emergency room with the pain. I still don’t have answers for this pain, and it’s super frustrating.
  11. Sometimes you might know more about a topic than a medical professional does… What? So, the internet is really helpful because we can do our own research. When I was searching for a doctor who performs the gold standard treatment for Endometriosis, I was told many times that they didn’t know what I meant… So the best treatment option wasn’t even something that is common knowledge? I even was asked if I was in the medical field as I explained what method I was seeking. Nope!
  12. And this one contradicts #11. Don’t trust the internet completely. It’s amazingly helpful, and we can connect with others going through the same issues, but know it has its flaws. Don’t fall for treatment or “cure” scams!
  13. Natural treatments are typically looked down upon in the traditional medical setting. When asked what medicines I take, I’d mention some natural supplements. Most of the time they hadn’t heard of them, and sometimes they told me they wouldn’t work. I’m a lover of natural things, but also weary because I’ve tried so many.
  14. Be prepared to not hear from your doctor’s office. So many times this has happened to me, and it’s the most frustrating feeling. I understand they’re busy, but when I leave a message, I truly have an issue to talk about. I wish office organization was better.
  15. Stay hopeful! I know the majority of this post sounds incredibly negative and disheartening, but I wrote this in hopes to help those of you who are in the position I once was in. ❤

P.S. Fighting for an answer/treatment is probably affecting your mental health. Be sure to take care of yourself and do things that make you happy in the meantime. 🙂

Wishing you the best on your journey, and I truly hope you don’t have to deal with these issues on top of dealing with pain issues.

-tmtf

Photo from Pixabay.com, by DarkoStojanovic

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Author: tiredmindtypingfingers

Writing about writing and chronic illness, and trying to make something out of it.

5 thoughts on “15 THINGS I’VE LEARNED THROUGH THE DIAGNOSIS PROCESS OF A CHRONIC ILLNESS”

  1. Great advice! I have experience as a PICU nurse and nursing instructor, and when my son was sick a little over a year ago with encephalitis and Guillain-Barre Syndrome, I had to really fight for treatment for him. Functioning was not good enough for me. You have to fight for your best life, right? I think more people need to be aware of that. Healthcare providers definately don’t know everything. It is up to the patient and his/her family to seek for answers and resources. I hope you find the answers and treatments you need. We are still working things out.

    Liked by 1 person

    1. I’m sorry you had to fight for treatment for your son – I agree, we need to be our own advocates. Unfortunately for those of us who struggle with speaking up for ourselves or if we don’t do a little research ourselves, our health may suffer. Thanks for reading, and best wishes to you and your son.

      Liked by 1 person

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