When I was getting ready to leave Fort Bragg after 2 years of the qualification course, I had a few days of idle time before my various appointments in the clearing process began, so I decided to be proactive for once. I started by paying a visit to the personnel (think human resources) section to let them know I had an appointment in a few days time and to ask what I should do, or bring to make it as smooth as possible. They congratulated me on my foresight and went to pull my file so they could see if everything was in order and if anything was missing. The clerk returned after a moment with a nearly empty folder. It turned out that almost everything was missing and after asking, hopefully, if I was just starting instead of clearing, they said there was going to be a delay as they tried to piece my records together.
Fortunately, years before, on a wiser person’s advice, I had started an “I Love Me Book” and happened to have it with me that day. It’s simply a large 3 ring binder with dividers and document protectors that contains a mostly, chronological record of everything I’ve ever done in the military, including my time there at Ft. Bragg. Because of it, I was able to provide copies (no way I was giving up my originals) of every set of orders, every course completion document, every evaluation, and so on.
Proactive, because I’d been in the army for more than a day and knew things, especially paperwork, got lost, or misplaced? That too, but more importantly because it was my record, my documents and I had a huge personal interest in them being accurate, much less, actually being there. I’ve crossed paths with some amazing people in my time in the military, but no one cares about me like……me. You could say I have skin (quite a bit of it, in fact) in this game.
Something else, another “game”, that I do, quite literally, have all my skin in, is my healthcare. Even if I didn’t have multiple sclerosis, no one should be more involved with, or care more about my well being than me. It bothers me to hear someone tell me that their doctor, etc is the head of their healthcare team. Wrong! You should be the head of your healthcare team.
I see 2 neurologists, both MS specialists. There is no doubt in my mind that either one knows way more about MS than I do. That’s why I see them. Otherwise, what would be the point? They know me, know my history, abilities, progress, and lack thereof. It would not be stretch to say they care about my health,……..but not as much as I do.
I hate to use cheesy motivational phrases, or sound cliche, but, I’m more than my MS. The neurologists are very high up on the list of my healthcare team members, but certainly not the only ones. They know more about MS than I do and that’s how it should be. My orthopaedic doctor is aware that I have MS and vaguely remembers a lecture on it in medical school, but has forgotten more about shoulder anatomy than I’ll ever know and that is exactly what I need/want. The list goes on and includes, my GP, physical therapists, ENT, and so on. The point is that each one knows and is an expert on, a part of me, but I know me.
With my progressive MS and level of disability, there is never a waking moment when I forget that I have this disease. You might say that it has my undivided attention. I’ll be the first to say that your MS isn’t my MS. Experiences, disease types, disability levels, etc, vary greatly, but if you have it in whatever way, shape, or form, you are sort of obligated to learn as much as you can about it. Not thinking about it, or bothering to learn about it, are not good options.
You are your own best advocate. So advocate.
4 replies on “Skin In The Game”
Thank you! Sometimes it’s hard trying to be your own health advocate when you feel as nobody cares. I wholly appreciate that.
Mal!! Good to see you again! Nobody cares about us like us. I wish I was a healthier, more energetic advocate,…..but then I guess I wouldn’t need me. If only I knew back then what I know now. Then younger, healthier me might not have ignored this for so long.
I definitely have to be my own advocate when it comes to healthcare here in the UK. My health team are all great – but I rarely see them. It is a continual push from me to get referrals/reviews and I find it so tiring and frustrating. I am guessing it has something to do with backlog etc. But I’m aware that there are likely so many others who don’t have the energy or nuance to request/fight for what they are entitled to.
Thanks Jenny, I really should have caveated “advocate for yourself” with “if you are able”. I’m able most of the time, but there are plenty of times when I’m too tired, too resigned to where I’m at now (why should I ask? This is as good as it gets), and too foggy to remember to ask everything I should. Where was my self advocacy when I was younger and healthier?…..Oh right.