Wow, what a week this has been. It’s always funny to me how life never fails to let you get comfortable and then pull the rug from underneath you. Just when I thought I had reached a good place and gotten my disease under control (to my best ability) I find myself in an ambulance being rushed to the hospital. It was a rough situation and one that looks like it will be putting me through quite a roller coaster for the next few months.
I ask myself this question far too frequently. Maybe it’s because when I first started having symptoms 10-15 years ago I was usually told it was all in my head. That was not all I was told… I would have people tell me I was acting sick to get attention too! Because.. That’s logical… Apparently people think that sick folk just want to lie around in bed all day. Does that really sound appealing to anyone? After about 24 hour you start getting antsy and need to get out of the house before you feel like you might actually go stir crazy! Trust me on this. But it wasn’t just the general population. It is also the doctors. Why do you think we need to have second or third opinions just to get a proper diagnosis? Doctors just don’t believe it if they cannot see it. Unfortunately often times when I get a new symptom (even with the doctors knowledge of my genetic diseases) they doubt it. If it doesn’t sound like a big deal to them they shrug it off or attribute it to medications or stress and the like. More often than not these symptoms become much more than anyone originally thought. I don’t think anyone really understands how insanely frustrating this is. To be second guessed at every appointment. Especially if you’re a woman, seeing a male doctor ( look for future blog post on this subject!). Females are often highly regarded as emotionally unstable, illogical, overly dramatic, no pain tolerance, etc. This constant treatment of doubt and questionability not only makes a spoonies life more exhausting and stressful than it already is but it can also hurt our chances of a timely diagnosis.
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.
I am often asked how I manage being a parent while being in pain or sick etc. I am asked if I would have known about my illness before being pregnant would I have decided to not be a parent? I am doubted by many on what I am able to handle with my disease and often held back from doing the things I want to do or accomplish in life because of the doubters. My response is often that you only live once. Being sick should not hold you back from the things you truly want in life or the things in life that will make you happy. Happiness is hard to come by, often, when you are in pain and ill. So we should cherish the moments of happiness every chance we get. Continue reading
I recently went to see a production of Into the Woods. A favorite song of mine from this musical states “You are not alone. No one is alone”. For some reason this has stuck with me the last few days since. I sit back and think about how these words roll off the tongue so well when it is you saying it to someone else. Looking in the mirror and telling yourself you’re not alone is a whole other picture. In the world of chronic illness it is so easy to be sucked into this world of secluded misery. You begin to realize the amount of people that drop out of your life. You feel like even those that have stuck by your side do not understand what you’re going through… And to a certain extent they obviously don’t. You blame yourself on occasion. Telling yourself maybe you could be stronger, maybe the pain yesterday wasn’t as bad as you were making it out to be, maybe I could fight a little harder, maybe it’s all in my head and I can make myself better. It’s easy to be sucked into the oblivion of trying to rationalize your situation. It often feels like no one understands this cycle we get caught in. A cycle that solves nothing and gets us no where. So what do we do? We fight. Right? That’s what everyone else does. They fight. And here we are again at the other end of the circle… where all is easier said than done.
It’s time to get real about doctors and their treatment of their patients. As a patient we often view doctors as an authority. With their extensive training and eduction in medicine, this is normal. When we think of a doctor we think of someone kind, patient, intelligent, and ready to serve people, for a greater purpose. We expect, when we go to visit the doctor, their undivided attention, utmost compassion, concern for our well being, and the drive to do what ever it takes to help their patients. Often times what we get instead is a quick hello, poked and prodded, barely a glance, maybe an eye roll or two, a prescription and a fat bill on the way out. Continue reading