Before I dive into this topic I feel something needs to be clarified. There’s this misconception in the special needs community that all of our stories need to filled with hope and joy and a light at the end of the tunnel. That everything we write about should be rays of sunshine. And oh yes we had a little struggle but look at how amazing everything is now and how much we have over come! I’m here to call bullshit. Not every story has a happy ending. And our stories certainly don’t just begin and end with one struggle we have overcome. There’s a lot more to the journey that is the life of a medically dependent or special needs child and it’s full of constant battles that never allow us to come up for air. And yes. Maybe we will have a happy ending and win the war. But that doesn’t mean I’m going to tell our story in a way that makes you feel all warm and fuzzy inside. So here it is. Here’s just a sliver of one of our current realities.
Don’t get me wrong. I’m not saying there are no happy endings and that we aren’t filled with amazement and happiness for everything our son accomplishes and endures. We are beyond luckier than most families in our position and are often far better off with our incredible support network. What I am saying is just as anyone who has lived this life. Happy endings and fuzzy feelings are not a constant.
In the world of doctors and patients trust is a key component when it comes to diagnosis, treatment, and overall care. However, trust is a two way street. The doctor must trust the patient and the patient needs to trust the doctor. This is a relationship that can take time to form and develop, but what happens when you are working with a medical system that trains it’s doctors to never trust their patients? That is the system we are working in and it has created a monster of a medical industry filled with millions of un happy, mistreated patients, mis diagnosed patients, and doctors who believe they know all and are god’s gift to the world. We have entered an era of medical practice where the patient is no longer valued as a human being, but as a liar seeking attention, or someone who has something to hide, basically an individual that does not really need medical attention unless they present symptoms of death, and even then they probably would doubt the patient!
One of the most exciting experiences of being chronically ill and having to see the doctor all the time is making appointments! Are you getting the sarcastic tone? I dream of getting to sit on the phone on hold frequently while the doctors’ staff or their nurses tell me he/she will be unavailable for weeks..maybe months! It never made sense to me when first dealing with my diseases why I could never get an appointment in the actual week or days I needed the appointments to be! Why could I not see the doctor when I was not feeling well or when I was presenting with the symptoms that could help the doctor diagnose me. Instead, I would have to wait, which would result in an un eventful doctors appointment that entailed me doing my best to explain what I was going through while the doctor would look at me puzzled and state “well, I’m not sure what you were experiencing but since the symptom is no longer occurring let’s just wait and see if it comes back, then call me.”. “FREAKIN GREAT!” I would think to myself. In many cases, said symptom would return, and I would immediately call the doctor to be told “He’s not available until next week at the earliest” or “he’s away at a conference” or “She’s on vacation”. Sigh… “Why can’t I ever get in when I’m actually sick?!” So frustrating right?
The touchiest subject of them all. Medical Insurance. Specifically medical insurance in the United States. Now a days of course it’s almost considered politically uncouth to bring the subject up amongst acquaintances, but I’m going there. I can ramble off statistics about medical bills being the number one cause of bankruptcy and why it is so important to get universal health care in this country. I could tout of all the reasons why the arguments against universal health care are ridiculous. How if you think medical care would go down hill or waits would be longer for appointments etc. you may be delusional as we already have those issues, it’s just we have to pay for it out of our pockets. Out of pockets or out of taxes it’s all the same. But it’s not. It’s financial suicide for the people in this country. Medical Insurance companies have all the power and for those of us with chronic disease and/or rare disease it never works in our favor. So I’ll stop there and get off my soap box. I obviously have very strong feelings about this as most who have dealt with the medical insurance industry all feel the same way I am sure. It’s not something anyone who hasn’t dealt with it understands. Instead I’ll share my experience. What one person with a chronic illness deals with. Multiply this by millions and then you get an idea of how big of a problem it truly is.