SELF-ADVOCATING
Anyone with a health condition has to get prepared to battle the noise, opinions and suggestions from all sides.
Your Health. Your Needs. Your Purpose. Your Future. Your voice. You have to commit to standing up for those things even more than ever before.
Who/what you listen to, what you take personally, what you disregard becomes a carefully curated message to yourself and others over the course of your life.
Yes be positive. Yes be patient. Yes be respectful. However, also advocate for yourself. It’s a dance. A forceful, demanding, negotiated, tactical dance.
DOCTOR’S APPOINTMENTS:
Your doctors are there to treat your disease AND YOU. The WHOLE YOU. It should be more than a chart and a list. It should be personal. If your doctor isn’t engaged and invested in your total health journey, maybe they aren’t the right doctor or care-team for you.
If you’re going to spend a large amount of your life sharing your private personal details with doctors and nurses, the hope is that they are all in. Ready to approach it from all side, with a unique perspective suited to you. NOT JUST option 1a on the list of potentials for someone who fits your demographic, age, weight, etc. information.
When something changes you have to be ready to review the facts, predict impacts, assess urgency, and ensure it aligns with your needs too. Example: A DOCTORS CALLS AND CANCELS AN UPCOMING APPOINTMENT… They say they can reschedule you in 1 month….
Are you comfortable with that?
Is it something can wait a month?
Does your doctor know the details of the happenings since he/she last saw you?
Are you prepared to stand up for yourself if the answer is “NO” to all / some of those questions?
I recently moved from Los Angeles California to Washington DC. All things changed…. new home, new insurance, new doctors. Choosing a new doctor from a list of pre-approved in-network Neurology Physicians felt cold and impersonal. I had to choose someone who could see me in June, so I could reset all of my medications and treatments with a new care-team before my old prescriptions ran out in Early July.
When the doctors office called 5 days before my scheduled appointment to cancel it, I was suddenly pressured to ask myself those three questions above. I answered NO to all of them in about 3.22 seconds, and with that it was my right to advocate for myself. I had to push that team to get me into a doctor, to ensure that I was not letting myself down or risking my health & safety because of a “scheduling error”.
I waited on hold for 15 mins, had to be “transferred” twice to another department, and was eventually called back 3 different times in order to “fit me in” the schedule, which required me to reschedule meetings, calls, etc to adapt with their change in schedule. It becomes an art form to strategically negotiate with the health-care system to stand up for your health. But the patient has to get comfortable with this medium of art, or they’ll never receive the level of care, support, and connection that they deserve.
Of course I don’t expect to be patient #1 every time, and no one wants to be known for “over complicating” or using excessive force to get your way. But I assure you… there is a time and a place to assert yourself, your needs, and your demands.
UPCOMING PLANS / SOCIAL ENGAGEMENTS:
It’s not just about doctors or appointment or treatments. Sometimes it is about the dinner plans, or birthday party, or hiking trip. THE GOOD STUFF. The moments that make the memories worth living this beautiful life for.
And sometimes it is about saying “Sorry I can’t make it” to those moments. Risking the FEAR OF MISSING OUT “FOMO” feeling. Risking the rolled eyes, or the ‘I knew she’d cancel’ scoff…
There are going to be some moments that you need to miss. Not because you wish to be absent from those celebrations or events, but because there are times when a little extra rest, peace and relaxation can be the difference between a minor relapse and a hospitalization.
Push yourself to experience great things, make memories, and try new things. But don’t push yourself so hard in the search for those ‘things’ that you push yourself over the edge and require more intervention than necessary to recover, only to repeat the cycle again and again.
Honestly, the above doesn’t just apply to those that have chronic illnesses or health issues… as a good rule of thumb they should apply to everyone. Everyone should be willing to say “I need a break” in order to advocate for themselves that they are human and need to rest in order to be at their best.
Charlotte Raejole