Angry and Frustrated

If you're a regular reader, you'll know that I'm a generally positive, happy person. I know this might come as a shock to some, but I'm still human! I have my share of pity party days and days when I'm angry or frustrated. Well, today is one of those days.

I've been dealing with chronic illness for my entire adult life, and I'm frustrated that so many in the medical community (and definitely the general public) are ignorant when it comes to dealing with "invisible" illnesses. Ask random people on the street what they know about ME/CFS, and you'll probably get blank looks or misinformed answers. I get even more frustrated when I hear from fellow patients whose stories of dismissive doctors echo my own.

I'm angry that I don't know what it's like to be a normal, healthy adult. I'm upset that I've spent over a dozen years and thousands of dollars searching for answers and relief only to be left with little to no relief, a lot less money, and even more questions.

I know I'm lucky that I've found a few awesome doctors who have become allies in my search for answers, but I've also had so many awful experiences with idiot doctors and nurses who think they know everything when in actuality they know very little. (One idiot doctor in particular almost cost me my life due to a misdiagnosis and ignorance of a particular medication's possible side effects.) I'm even annoyed that I feel "lucky" to have found good doctors. Shouldn't all doctors that we go to be good ones?

I feel hurt and frustrated when well-meaning friends and family tell me that, well, at least what I have isn't "more serious"/"fatal"/[insert something dismissive here]. "At least it's not [insert a more well-known illness here]" is equally dismissive and ignorant. What they're really doing is minimizing the impact my health has had on every single day of my entire adult life.

I'm also angry that very little progress has been made in terms of what we know about ME/CFS and other less common chronic illnesses. I started blogging in 2009 and had great hope that things would change for the better. Now it's 2013, and I have seen very little change.

When I started blogging, the iPad had not yet been released and people were still really excited about the iPhone 3G. Since then, the 2nd, 3rd, and 4th generation iPad models and iPhone 3GS, 4, 4S, and 5 have all been released and are old news. If we have phones that understand us when we speak and can act as personal assistants and speak back to us, why have we not made any real progress when it comes to ME/CFS and other chronic illness?

I still have hope that I will find answers to whatever is wrong with me. I'm not going to stop until I do.

The Cost of Chronic Illness

Even with good insurance, chronic illness is expensive.

My husband and I spend more than $5,000 per year on healthcare expenses (including what we pay for health insurance) just for the two of us. You can bet your bottom dollar that most of those expenses are for my healthcare.

I pay $99 per month ($1,188 annually) for my job sponsored health insurance (my company pays an additional and hefty $431 per month -$5,172 annually - on my behalf). My husband pays $77 per month ($924 annually) for his job sponsored health insurance (his company pays an additional $225 a month - $2,700 annually - on his behalf). The difference in cost between our plans is because my husband has a more economical plan since he is in good health and rarely needs to see a doctor.

The cost of my medications and treatments is truly unfortunate. I've never actually calculated how much everything is per year, but I would guess they easily cost over $2,000 annually (and I wouldn't be surprised if it was actually closer to $3,000). My husband's medications, on the other hand, come out to less than $300 per year. Every appointment with my regular doctor or a general practitioner is $25 and every appointment with a specialist is $35. Considering how often I visit "the doctor," $25 and $35 per visit adds up pretty quickly. I'm lucky that my insurance plan covers the cost of bloodwork and other diagnostic tests, often at no cost to me. My husband rarely goes to the doctor.

If our companies did not offer such good health insurance plans, we would really be in trouble. You don't even want to know how much all this would cost without insurance or if we were under insured.

But just for fun, let's guess.

Without insurance (or without a prescription plan), here are a few examples of how much a few of my prescriptions would cost:

Advair (three month supply): $571.65
Yaz (three month supply): $179.65
Generic Zoloft (three month supply): $92.88
Albuterol Inhaler (three month supply): $88.63
Generic Flonase (three month supply): $81.78

These medications already add up to more than $1,000, and we're not even looking at a complete list of everything I take.

Each of my visits to the doctor would easily cost $100 or more, and all the countless bloodtests I get would cost even more. Labwork is very expensive. Without insurance I would definitely not be able to afford the immunotherapy (allergy shots) I'm currently undergoing to help improve my quality of life. The cost of major tests or invasive procedures is even more frightening. My MRI cost me $35 with insurance, though my insurance company was billed over $2,500. My colonoscopy cost $35 with insurance; my insurance company was billed over $5,000.

Here's a real shocker. I just added up all the claims to my insurance company over the past 12 months (June 2008 to June 2009), and the total is $17,741.47!!!!! I wouldn't believe it if I didn't have my insurance information right in front of me. This number doesn't even include my husband's expenses, though his would not make as big an impact. It also doesn't include my prescription expenses.

I can't even imagine living with chronic illness and having no insurance or being under insured. I haven't even taken into account the cost of dental or eye care in this post. I really can't imagine living with chronic illness in a country with poor access to proper medical care. It would be a difficult way to live.

The US healthcare system needs to change. Unfortunately, I'm not sure how. I only know that I am not any more deserving of good healthcare and a decent quality of life than an hourly worker or an elderly person on a fixed income simply because I can afford it more easily. I am not taking sides or playing politics, I'm just pointing out a flaw in the system.