Have you had a chance to start sharing your story, curating your schpiel, feeling understood and supported by family and friends around you?
Perhaps you already have a full network of providers (read: PCP, multiple pain management specialists, a PT, GI, neurologist, rheumatologist, acupuncturist, therapist, etc.)?
Maybe you are just now feeling ready to share your story with providers and don’t know where to start?
This is for the latter group and it warrants a full blog post because it can be quite the overwhelming process. I mean, there have been times I have found myself lost, frustrated, and waiting months to be seen only to be ignored while in the room and rushed out in a few minutes time.
I also want to preface this by clearly communicating that I think providers of all backgrounds are smart, well-intentioned individuals and while I am borderline in love with some of my providers (I hope you know who you are), I feel like I take something positive from even my less-than-stellar experiences because they help push me to advocate for what I feel and what I want, a trait I think I can take with me for the rest of my life. I also want to open up the possibility that Western medicine providers aren’t the only ones with answers. Explore Eastern practitioners and see how you respond to their treatment plans. You don’t have to choose one over the other. I proudly subscribe to both approaches to wellness and find the most relief using a combination.
Some tips to find and connect with a provider:
1. If you have a provider of any specialty already, ask them if they have a referral source. Chances are, the people your trustworthy provider will connect you to will be trustworthy as well. If not, hopefully your comfort level with that original provider will give you the chutzpah to report back that the referral did not work out and they should think twice before referring to that provider again.
2. If you don’t necessarily have a trusted provider, start looking within the network you currently use. Locally we have Caremount and Healthquest, in addition to many individual primary care providers. I have providers sprinkled everywhere and it can be difficult for your different providers to have access to the records and findings of your other providers, which is always nice so that they can work to best understand the big picture.
3. Two websites (there are more) to look specifically for mental health providers are Psychology Today and TherapyDen, where you can also type in your zip code and some key words and a variety of pages will come up where therapists post their pictures and a little bit about themselves and their work.
4. Insurance company websites usually have an option where you can type in your zip code and type of provider you want and they’ll provide you with a local list of in-network options. Unfortunately, not all providers are in-network and will have to be paid out of pocket. I highly recommend calling your insurance company to ask about their reimbursement policies because many times there will be an option for you to receive at least partial reimbursement for services completed if you submit a receipt afterward.
5. I know many providers have options now to book online, which can be the preferred method for individuals trying to schedule something. Keep in mind, providers might also have some extra availability for individuals who call on the phone looking for an appointment. So, don’t give up if you see a gray-ed out calendar with no openings. Give them a call and see if you can get it that way.
Hallelujah you found a provider and you are about to have your first appointment!
How to best prepare:
1. Write down on paper, computer or on your phone details of when you started experiencing symptoms, how they change, and if you have any insight into what helps and what makes it worse.
2. If you don’t have as much experience sharing your story with those around you, maybe practice the schpiel that you’ve prepared for the provider with a trusted family member or friend, maybe even someone who has watched you go through the experience and can remind you of things you may have forgotten to include.
3. Manage your expectations, a hard lesson I learned along the way. I used to walk into appointments feeling so relieved that I somehow survived the pain and would leave knowing exactly what was happening to me and with a treatment to be started immediately that would work 100%. I now understand that is not at-all a reality-based expectation and have reframed my hopes accordingly. 10/10 recommend!
4. To that end, have someone(s) who knows you are going to these appointments and what day/time they are occurring. This is good for two reasons. First is that they can and should text you the day before or day of to check in or wish you luck, which feels really nice. Second, people can be prepared to hold space for your updates *cough cough, tears* about how the appointment went.
Now, you’re in the office, talking to the provider, answering their questions, and moving forward with next steps.
How to advocate for yourself:
1. It can be overwhelming being in an office with someone you don’t really know divulging really personal information. Maybe you didn’t write down questions you wanted to make sure you asked or you forgot them as you were running out of the house. I’m a big fan of having someone (i.e., Mr. Dr. Arnoff) with me (even if it’s on facetime, thanks COVID) to remind me of things I wanted covered during the appointment.
2. If there’s a recommendation you’re not as comfortable with, express your concerns. I have had some side effects to certain medications before and when it was brought up as a preferred treatment I would just accept that to be best practice and didn’t say anything. Turns out, there’s more than one treatment plan that can be used to address a singular thing. No need to suffer, you’re going through enough. Speak up and see if there are other options that would make you feel more comfortable.
3. Something I say to the parents of my young clients is “I might be the expert in childhood X, but you are the expert on your child.” Same is true for you and your body, no matter what is bothering you. These providers are experts on the human body, but you are the expert on your body. If someone doubts, downplays, or down right ignores you when you tell them what you’re feeling, they are not the right provider for you (and would likely benefit from a Psych 101 lesson on empathy. Please refer them to BFF Therapy and we’ll make space for them :-)
After the appointment:
1. If it goes well, YAY! Jump for joy, call your people, take a deep breath, buy yourself a treat, you freakin’ deserve it. If it did not go the way you hoped, let it all out. Also buy yourself a treat (sweet tooth, sorry not sorry), cry, scream, punch your pillow, go for a run, take the nap (follow Bbear_DontCare on Instagram for napping puppy pictures that will change your life). Your body is already holding so much physical/emotional pain, it doesn’t need more. You might be feeling isolated in your frustration, but I bet you will find that those you share your experience with will be equally frustrated on your behalf. It’ll feel nice, trust me.
2. If you don’t feel comfortable for any reason with your provider after your 1st, 10th, or 100th appointment, it is your right to A) share what’s bothering you with them and/or B) find a new provider that is a better fit without explanation. I know it can feel like you are taking four steps backward, having to start from the beginning, waiting for what seems like forever for a new appointment, but it will feel just as long and frustrating to stick with the provider that isn’t doing it for you.
Do not allow anyone to make you feel like any of your pain is your fault and that you are not doing the very best you can to feel better.
Last tip: KEEP GOING. I understand the feeling that comes with leaving with minimal to no validation, a follow up appointment that you have to wait three months for, and two other specialists you need to do this with all over again. But remember, you somehow made it to this appointment, you will make it to the rest of them. It’s encouraging to also have providers you still get giddy about when you see their name in your calendar. You know you’ll be able to share every weird, personal, perhaps mortifying detail of your time between appointments with them, tears or jokes and all (whatever helps you feel better). You practically skip out of those appointments because they remind you that even if you don’t have all the answers now, you will figure it out, you will be okay.