On Becoming a New Patient

As the first post here at my my new home, I thought it fitting to return to that seminal moment in the experience of being a patient: finding out you have an illness.

I recently spoke with someone who is newly diagnosed, someone who has otherwise been pretty healthy. Our conversation reminded me of how overwhelming this whole process of being a patient and navigating the health care system can be. As a lifelong patient, I don’t always pay as much attention to this stage in the patient experience as I should, and I started to make a list of all the things that popped into my head as we spoke, ideas both big and small.

What tips or suggestions would you add to this list? What do you know now you wish you’d known when you first received a diagnosis, or, for those who might still be in the process of receiving one, when you first started experiencing symptoms and going to doctors? I’d love to hear your thoughts in the comment section!

  • Don’t feel awkward or guilty about asking for a second opinion.
  • Ask lots of questions—it’s important you understand what’s going on with your health. If you don’t feel comfortable asking your doctor questions, consider meeting with a new doctor or provider to see if there is a better rapport.
  • Some days will be really good. Some days will be awful.  That is okay. Your feelings as you process this are all okay.
  • When it comes to waiting—waiting for appointments, waiting in hospitals, waiting for results, etc., expect the worst and hope for the best. Time works differently in the medical world.  It’s frustrating, it’s not always fair, but it is a reality of the patient experience.
  • A lot of things might seem scary and out of control, but don’t forget—this is your body.  If something doesn’t seem right—a provide doesn’t wash his or her hands; a lab tech sticks you too many times; the test someone is scheduling for you doesn’t sound like the test you know you need—speak up! It might be awkward, but social graces are not worth your health or your sense of comfort.
  • Spend some time getting to know the online patient community. Sometimes, the anecdotal experiences and wisdom there, as well as commiseration and validation, can be enormously helpful.
  • Remember that everyone’s experiences are different, and everyone is at a different point in the process of treatment, acceptance, etc. Not everything you read online will resonate with your experiences, or with what your doctor tells you. Again, ask lots of questions, and don’t be afraid to bring what you find online to your doctor.
  • Drink lots of water and wear layers when you have blood drawn—being dehydrated or cold makes it even harder to draw blood.
  • You won’t get a lot of rest as an inpatient, but there are lots of things you can do to create a better environment and a sense of calm: familiar books, music, and DVDs make a difference, certainly, but you can also inquire about the necessity of overnight vitals to see if you can get uninterrupted sleep, for example.
  • Sometimes you will really want people with you at appointments, or will want to talk about it. Sometimes, you will want to be alone, or want to talk about anything other than illness. These are your boundaries to draw, and it is okay to ask people to respect them.

Also, if you have a moment, definitely let me know if you encounter any issues with the comment system, the subscription service, or anything else that comes up as I fully switch over to this new space.

(And, I am really happy you followed me over here!)

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6 thoughts on “On Becoming a New Patient

  1. The most important things:

    - If you want to get really good treatment, you need to really study your illness and unfortunately that also means studying medicine in general. Even most doctors who claim to be an expert in a condition most likely aren’t aware of the best treatments for it. Especially with autoimmune diseases and some other conditions chances are >95% you’ll get treated with something that only makes you _worse_ in the long run. I and numerous others would be dead or in nursing homes if we hadn’t become experts in our own illnesses. Often you need to choose whether you want to please your doctor and be a “good patient” or whether you want to get better. (Of course there are some conditions where there really aren’t any good treatments or only the 1-2 standard ones, but these are extremely rare compared to the others.)

    - Getting used to living with chronic illness is a grieving process. It can be helped by things like talking to friends, journaling, perhaps therapy or religious/spiritual stuff etc, but it still takes time just like any other grief. It can take years to fully accept being ill.

    • Thanks so much, Maija. I can relate to a lot of this; as a rare disease patient, often health care providers are not familiar with my condition, never mind the treatments, so it’s really important that I know enough to educate and bring expertise to the conversation.

  2. - Don’t underestimate the power of breathing. Deep, slow breathing can get you through difficult patches, procedures and such.

    - Seeing a therapist who specializes in chronic pain can be worthwhile, and can help you to find some coping mechanisms.

  3. I think new patients need to remember to trust their guys and if they’re not comfortable with their new doc that’s ok and make a change if you want. Being a new patient isn’t a contract!

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