advocacy

Hi! My name is Abby Bohannon. I live in New Hampshire. I am a medically complex young adult. I am 21 years old.

I do a lot of neurodiversity/disability advocacy work with a non-profit organization in my area.#MightyTogether #MitochondrialDisease #ChronicIllness #ChronicFatigue #Epilepsy #ADHD #Advocacy ##

Welcome to Mental Health Advocacy Group#3. We are so glad to have you here.

#MentalHealth #Advocacy #Disability

This is group# 2 of the Mental Health Advocacy Group# 2 Welcome. #MentalHealth #Advocacy

988, as you know, is a new number to call, in the United States, if your in crisis. We are getting closer to the 1 year mark of this number. I have a question for everyone Do you feel it has helped or do you feel, it creates too much confusion, when knowing, which numbers to call, when in a crisis? I would like to hear your take on this. Also, if anyone has used the number, what was your experience like? Looking forward to seeing some answers on this, in the comment section. #Crisis #MentalHealth #Advocacy

To find the information in this group, please go to the saved section of this group. #saved

#Advocacy #RareDisease

Being an advocate for your healthcare needs or for someone you're caring for evolves over time and I think of in two stages - Prior to Diagnosis and After Diagnosis.

There are some helpful tips I've learned along the way, through trial and error of course! I've found as I'm talking to others in the space, or family and friends navigating their own health challenges, these are things I share quite often.

Prior to Diagnosis

Usually the advocacy process begins here, as you're trying to get a diagnosis! This takes form of multiple appointments, second or third opinions, researching providers and symptoms, exploring insurance options, etc. You need to get knowledgeable on what condition you might have and whom the best is to treat you.

Tips:

Get organized! Whether its online, in your phone, or in old-fashioned notebook/folder combo, have some place designated where you can keep all information. Thoughts and questions come up at any time, and it's always good to have a place to write them down, because inevitably you won't remember them when you need to!

Questions for your care team Important phone numbers (doctor's, insurance company, your benefits department, etc. Reminders about office visits, where to park, what floor, who to speak to at the front desk, etc. Summary of your symptoms and condition, and ultimately your illness or disease. Your meds and dosage information. Do your homework! Spend some time researching. I know, I know - Google can become an abyss, but there is helpful information out there. If it's not something in your wheelhouse, maybe you can designate a family member or friend to help. Things to look up include:

Scholarly journal articles related to your illness/disease. Look up your provider and see if they have any published papers, academic research interests, current faculty at any colleges/universities. Organizations supporting your illness/disease. For instance, right after I was diagnosed, I found the Immune Deficiency Foundation and they became a wealth of knowledge and support! Best doctors for [insert illness/disease] in [location]. For me I’ve found that once we had an idea of what I have, I needed to do the legwork to see who an expert was in treating my condition. The health/systems and hospitals in your area and their specialties. See whom the doctors are and what conditions they treat. Understand your plan! Spend time getting a handle of your medical insurance. Know what your plan entails, what types of services/treatments covered? Know your copays and what's in and out of network. You might have used your benefits for a z-pack or regularly scheduled mammogram or colonoscopy, but now you really need to understand how your benefits work.

Reach out to your benefits team if you have an employer-sponsored plan. Find out the contact information, your benefits summary, and formulary. Get familiar. Most insurance plans have a portal for patients. If you've not signed up or logged in, do it! Get in there and look around. See your test results, find out where to message your doctor, learn where your billing information is found. Download the app if they have one and set up notification alerts.

After Diagnosis

Once the diagnosis has been made, the work is just beginning. Knowing the diagnosis means you can get familiar with treatments and medications, as well as connecting with others who have your condition, are caregivers too, etc. You will want to become familiar with your treatment plan and what to expect.

Tips:

Stay on top of your care! The ICD code is now official but remember, that is in name only. Follow-up appointments, documenting symptoms and side effects, following-up on med changes and preventive care are just as important now as ever.

Keep a running list of questions for your doctor as they come up. Hopefully, you've organized and have a system in place but being able to quickly jot down a question in my phone, allows me to get it out and I know where to look when I'm preparing for my next doctor's appointment. I try to spend a dedicated amount of time each month reviewing new articles or reading newsletters I've signed up or, blog posts, etc. related to my condition. It keeps me fresh on new topics and treatment and helps me stay connected. Get Connected! Social media can be a positive thing, especially for those who are going through a health issue or are a care giver. There are a plethora of Facebook and Instagram pages, LinkedIn groups, blog posts, and websites dedicated to supporting people on their health and patient advocacy journey. JOIN!

There's comfort in knowing you can ask a question, search a topic or just vent and get something off your chest with people who just "know." Finding CVID groups and the Immune Deficiency Foundation's Facebook and IG pages were hugely helpful! I always tell people there are going to be the extremes (always good and always bad), toss those away and look for themes and what's right in the middle. Having a can feel lonely, but connecting with people like you help make less overwhelming. Find a way to give back and volunteer. It not only helps fight for a cause so personal to you, but also feels good to connect with others and offer hope. It gives a sense of purpose when sometimes it's all very overwhelming. Don't Give Up! You will sometimes feel tired and that you can't make one more phone call, talk to one more person from your insurance company, or read one more Explanation of Benefits (EOB). So, don't! Take a pause but don't give up and don't stop. Allow yourself the break you need but keep going. It truly is a marathon not a sprint.

It's okay to setup a boundary of a "health-free" weekend or day for example. Just live in the moment and if that means read a book and stay in bed, or spend time playing outside with your kids, or watching a movie and not thinking about the illness for a few hours. It's okay to do that and honestly sometimes we need just a break. A moment to breathe. Things will be there when we go to pick them back up again. Sometimes, even after a diagnosis, you reach a point in your care where things changed. Needs changed. Your life might have changed. And therefore, your care will change. If your care team isn't meeting your needs, it's okay to get another opinion! I recently found a new immunologist. I waited six months and drove two hours to see him. He came from a referral from someone I met in a Facebook group. Fun fact - we've never met in person, although live in the same city! When I explained why I was there and the change I'd like to see in my care he said "Of course! This is YOUR life. Doing it the way you have been easy for me, but it isn't about me. It's about YOU. And doing what works for YOU." I knew right then and there I made the right decision to change doctors. Advocacy is personal journey. There isn't one right way to do it and you will learn as you go. Hopefully, these tips will help you get started!

Hi Friends,

My very first The Mighty story was published yesterday -- I am feeling so thankful, and also v nervous. This is the first time I have shared about my eating disorder so publicly and I am a little anxious about negative ramifications, especially with the huge stigma around eating disorders. As healthcare providers, we are often conditioned not to share things about our own health journeys, especially mental health journeys.

That said, one of our directors emailed the story out to the entire department! So now everyone I work with knows. While I really hope it can help foster much needed change for patients (and get more people to advocate against the new AAP obesity guidelines) it is also so so nerve-wracking.

What are your thoughts on this. Would you trust your physician less if you knew they had their own health struggles? Or does it make them more human?

Here is the story if you want to read it :)

themighty.com/topic/eating-disorders/aap-childhood-obesity-g...

<3 danielle="" #Advocacy #EatingDisorderRecovery #Beingbrave #healthcareprovidor #MightyTogether