Why I advocate for you to be your own healthcare advocate
This post is much more personal, and includes issues that I have personally experienced. This is my inspiration behind empowering women to be their own advocates and pushing for answers. I share this message with immense understanding for the individual human, the individual care provider because I, myself, am a healthcare provider. But our healthcare system – especially our military healthcare system – is broken, and we need to help fix it.
At first, I wasn’t going to share these stories. They are personal. They require me to be incredibly vulnerable, which is not a comfortable feeling. But after being nominated for Military Spouse of the Year, I decided to use this platform and opportunity to elevate these issues and advocate for solutions.
So, here goes nothing:
My Why
In 2010, I held my mom as she took her last breath.
Eleven days before, she was diagnosed with stage 4 uterine adenosarcoma. A supposedly simple hysterectomy led to rapid transfer to another hospital and a six-hour surgery where they found tumors in her uterus, stomach, diaphragm and lungs. That wasn’t the worst part; the worst part was that the oncologist said the cancer had been growing for anywhere from 1.5 to 3 years, but, according to him, her obesity likely prevented a prompt diagnosis.
If you look up signs and symptoms of uterine cancer, you’ll find things like:
- Abnormal vaginal bleeding or discharge
- Pain or pressure in your pelvis
If you look up signs and symptoms of ovarian cancer, you’ll find additional symptoms to include:
- Feeling full too quickly or difficulty eating
- Abdominal or back pain
- Bloating
- More frequent or urgent need to urinate and/or constipation
You see, my mom had several of these symptoms. Abnormal bleeding, immense back pain to the point of not being able to walk right, bloating, and more.
But when my mom sought care for these problems, they dismissed them as, “You’re just too fat” or “Just lose weight.” They failed to listen to her, to dissect the root cause of these symptoms. They said “Exercise more,” but my mom and I were at the gym together at least 4 days a week. They said, “Eat less.” But my mom was following a similar diet to what I was eating – and that’s when I was at the lowest point of my eating disorder, rapidly losing weight. Clearly, we weren’t eating enough. Yet, she couldn’t lose weight and they failed to investigate why.
Over the last 11 and a half years, I have utilized this tragedy to push for more answers because, admittedly, at the time, we didn’t know any better. But now I do, and that’s why I’m begging you to be your own advocate.
You know your body best.
My Knee
In 2019, I was struck as a pedestrian. It caused a knee and back injury that took me over a year to recover from. Here’s the thing though: It shouldn’t have taken a year. I am truly blessed that the injuries weren’t worse than they were, but the healthcare system – especially the military healthcare system – needs to be better.
I started physical therapy on post in January for my injuries. They weren’t significant enough to warrant surgery (or so they thought). Immense pain, impaired ability to walk, and inability to exercise as I was used to (I ran 2 miles the day of the accident) deteriorated my mental health. I sunk into a deeper depression every day. July came, and I had a follow up with my provider. I wasn’t seeing the progress I wanted. I knew something was wrong. Something was missing.
“I don’t want to say it, but I think it might be in your head.”
Demeaning, right?
I left feeling defeated. I was on the verge of accepting my fate that I would never have full range of motion or use of my knee again. I wouldn’t be able to go back to playing tennis, strength training, or even running with my dogs.
But after two very delayed and almost entirely missed cancer diagnoses in my family (my mom, as I mentioned above, and my grandfather, whose story I won’t get into), I knew that I had to keep pushing for answers.
I finally got a referral to be seen by an orthopedic surgeon off post and within a week, I had surgery to correct the issue. Eight months. EIGHT MONTHS and being told “it’s in your head” and I finally had an answer. Now it took an additional 6 months of now off-post physical therapy to be able to jog for 5+ minutes, but I finally could do it. I can now even wear heeled boots again! Why? Because I pushed and pushed and pushed for answers.
We have to be our own advocates.
Another story: Women’s health availability
Now this one isn’t so much about a diagnosis as much as it’s about the accessibility of services.
At the end of December, I noticed a cyst. This wasn’t a new story for me. Unfortunately, it was my fifth one of this nature. I knew exactly what it was and what care I needed. So I reached out to my primary care provider to get a referral to women’s health, as it’s a female issue and best handled by a gynecologist. Now, if you’ve ever had a cyst before, you know that they can be painful, and they can suddenly grow in size (and pain!) very quickly.
Their first available appointment? The last day of January.
A couple weeks into January, I knew I wasn’t going to be able to wait until the end of the month. I was struggling to walk, especially when it came to stairs. I was previously working out a minimum of 4 days a week and then I was down to none. And if you know me, you know that exercise is a huge part of my stress management and promoting my mental wellbeing.
I called. And called. And called.
Some days, the call would actually be picked up and others I would be unable to get through entirely.
No availability. No changes to our schedule. “We can’t see you,” they’d say.
Now, I am a firm believer that emergency rooms are for EMERGENCIES – life or death, you cannot breathe, it’s a true believer. I frequent them as LITTLE as possible, the last time being when I got into that accident.
But here’s the thing: Care was not accessible.
When you look on Tricare’s website, they say that they “give our beneficiaries access to high-quality health care.” But that quality, in my opinion, is highly questionable as a result of poor accessibility.
When I couldn’t get into on-post women’s health, I called a few urgent cares to see if they would provide the services I needed – desperate to avoid the ED. “Nope, go to the emergency department,” they’d say.
So, there I was. In the emergency department.
And not just once, but twice for this cyst, before my end of the month appointment arrived. When I finally did go to the women’s health appointment, they were absolutely wonderful. But we have SO MUCH red tape, so many gatekeepers, that we end up flooding emergency departments for issues that wouldn’t typically be considered an emergency because we are left with no other choice. This is not something that should be happening on a routine basis. We deserve better.
We need to advocate for better.
The stories go on and on.
My husband, an active duty servicemember, had the wrong size steel plate put into his leg, so large that it bulges out and causes daily discomfort. Oh, and did I mention they completely forgot to give him a nerve block during the surgery, so he woke up in absolute agony?
A pregnant friend had a provider come to her emergency department bed and say, verbatim, “Your baby’s dead.” I can’t even begin to imagine what she felt. The love I have for my goddaughter (left) is unwavering, let alone a new life growing inside me.
Another friend, an active duty servicemember, required surgery, but it was postponed due to field training. That person now requires additional surgeries because care wasn’t provided in a timely manner the first time.
A mutual friend was having weight-related side effects of a medication that were affecting her self-esteem; the provider refused to change the medication because it was having the other effects needed- even though there were many other options on the market that would have similar benefits without the weight-related side effects.
Our stories aren’t unique. They are faced by many within this military community.
It’s time to be our own advocates, to make noise.
From Our Readers
"THIS is why I 'doctor shop.' This is I will always ask for a second opinion. All my problems are NOT because I am overweight. If it was not for us pushing to get an ultrasound they would have never found my cancer the first time. Always be your own advocate."
"My 3 and 4 year old boys had double pneumonia and ear infections. When they had pneumonia, [the providers] wouldn't test or do anything because it hadn't been 48 hours and 'was probably a cold.' My kids are asthmatics. We went through the entire weekend with self-managing respiratory distress for them. [One of them] had just turned 3 and is a prior NICU baby. My 4-year-old had an oxygen saturation of 89%. You could hear the grunting as his body tried to push open his airways by building up pressure/holding his breath. All signs of respiratory distress."
"I have been fighting for 3 months to get a referral to a real provider, to a place that can help me with my ADHD that is causing anxiety. Every referral I get is to a clinic that is not taking new patients or to a provider who is no longer at the clinic. Finally, referral management told me to pay out of pocket for a diagnosis appointment if I need support so badly."
"I had hyperemesis gravidarum with heart complications and was forced to self-manage my pregnancy because they wouldn't code me as high risk."
"My husband had dry sockets from his wisdom teeth and was told he didn't, given toradol, and then we had to go pick him up in an hour away at an ER in Alaska winter."
"We are really worried about the medical billet cuts that are coming (2022 NDAA but a hold on them but they are coming). This combined with the new Tricare T5 contracts coming out makes us very concerned with what is happening with military health care."
Learn more about the 2022 NDAA here. Learn more about the new Tricare T5 contracts here.
"I made a telephone appointment with a doctor on base yesterday so I could get on antidepressants asap because I know my mental health is at an all time low right now. I answer the phone call and tell them I needed to get on antidepressants and she says 'well by looking at your records it could be possible you’re feeling this way because you are overweight' I was shocked. I told her I was on antidepressants from 2018-2020 and have been in therapy for my depression and anxiety since I was 17 years old. I tell her I’ve been skipping school and calling into work and sleeping 12+ hours a day because I’ve been so depressed She still says she wants me to get lab work done to just 'make sure.' I was so hurt and mad getting off that phone call, and people wonder why no one asks for help."
Have you had a negative experience with our healthcare system? Submit your story here.
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