In one of the contacts that I have had since I started writing this blog, I was asked for advice about advocating for oneself within the healthcare system. It is a valid question. In this country, honestly, the best way to navigate the system is to stay out of it. If you do find yourself in the need of long-term healthcare for some reason, though, advocates (on your behalf or for yourself) are vital. Probably stopping short of actual “advice” as I am just now starting to advocate for myself, let me approach it this way: here are some observations over my time “in” the healthcare system.
Select a provider that is both knowledgeable and friendly. Often this person will be your only contact (well or their nurse structure) to your care team, so you need to be able to speak to them and feel heard. This becomes important when you have solid questions about what is happening to you. As I mentioned previously, my diagnosing doctor failed miserably in this. In hindsight, I wish I had moved on. If I had known that there was a different world out there, who knows what my reality would have been over the previous 10 years. You deserve answers. If you ask “on this medication, can I have a beer every now and again” and they answer “Do you mean can you drink? Sure, if you want to have a glass of Scotch occasionally, that is fine.” or you say “I don’t know if it is related, but my shoulders have been very tired recently” and they respond with “well, I didn’t want to do this yet” and give you an unnecessary script… maybe these are tip-offs that you are not in the right place. Advocating starts here.
A happy part of “the system” is that if you have managed to find a provider who works and will work for you, they frequently have a care team in place that are going to provide the same brand of care. This is important, because they are your advocate team. They will be the ones responsible for dealing with your insurance and navigating the hoops that you will have to jump through to keep your care consistent. You are not their first patient or time navigating the hoops that insurance has set up. This is, in contrast, the first time that you are experiencing these specific hoops. Lean into them. They know, if somehow you have been dropped from your insurance after a pre-approval for a treatment, how to navigate the back channels to get a $150,000 bill forgiven, for instance. I don’t know if there is an assistance program through the drug company for every drug, but I feel like most of the ones that I have been on have had such a thing.
If you hit a point where you feel like you need to wade in and get involved with your insurance… be prepared to invest *days* worth of time. The system is set up the way it is for a reason. Spoiler alert: That reason is not to provide you, the patient, with gold-standard care that you are comfortable with. For instance, they might tell you that the site where you have been taking your treatment for multiple years… where you are recognized by the nursing staff in spite of only being there twice a year, is not acceptable any more for some reason. You have to go to a different place (oh, it’s in the same umbrella company) and by the way they can’t get you in for 2 months past your treatment date.
Allow yourself to accept that if you stop the fight in order to keep your treatment on schedule, you have done yourself a service. I have mentioned that on my current treatment, I have had no evidence of new disease activity. In an illness like MS, this is
vital. The disease can shift forms, and if you give it an open door, you are allowing that possibility to come into play. Maintaining a treatment that works is more important than maintaining what the treatment experience looks like. Yes, it probably means that somehow “they” win… but you are winning at that point too. Being belligerent about it doesn’t help you. They will still win. The game is set up to ensure that. So get the end result that you need (your treatment that works).
If you have to switch sites, do so with an open mind. You are going to find a much larger number of sweet, compassionate nurses than you will find crusty unpleasant ones. Just because you are new to them and they to you does not mean that there is a lack of commonality. Smile at them. They are not the insurance company, and they truly only want for you to have the same thing you want. Your treatment. In fact, they probably received your drug and supplies at their home and had to prepare them for you at their home. You’ll feel better too if you are kind to them.
If I identify a way in which I advocate for myself, I may revisit this topic down the road some day. In the meantime, #1 #1 #1 #1 #1. Advocating for yourself is tied directly to finding a provider/clinic that can advocate for you.
I know that this blog is my story. It is my perspective. Only mine. This thing is so wildly different that someone else that you know with the same battles will have completely different stories. BUT - Please share. Go back to the first post. Share it on your Facebook. Share it on your Twitter. Shout it from your local hilltop or mountain. If I have managed to reach the number of people that I have from my limited audience, maybe if we cast the net further, we have a chance to do something good here… something real. There may be someone out there that you know that is struggling. That needs support… that needs a hand… and they might not know how to ask for it. I am here to tell you that it could mean everything to someone. (additionally, you can send them to my blog-specific twitter @brainplaques) Let’s help some humans.
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