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.

I'm Angry

So I don't normally write more than one post in a day. I also don't write when I'm feeling sick, but this time I needed to write so that I could clear my mind and go to sleep.

I'm angry.

I went to the walk-in clinic today (see previous post) to try to get a throat culture, as my current symptoms are what I experience when I have a bacterial throat infection. I'm still running a low-grade fever and it feels like a knife is stabbing my throat when I swallow.

I chose this particular clinic because the online description said that it was equipped to diagnose for strep throat. Unfortunately, this claim is not entirely true. They are able to conduct the rapid strep test -- but not the true throat culture.

Of course, I didn't learn this little fact until after I had been checked in and paid my fee.

What's the difference? Well, thanks to my funky immune system, my body does not react to infections like most (read: textbook) cases.

When I have a bacterial throat infection, I do not run a high fever. In fact, there are times when my body temperature has remained normal despite confirmation of infection. My throat also does not always get white spots or streaks that are characteristic of bacterial infections, especially since getting my tonsillectomy (and, yes, you can still get strep throat after you've had a tonsillectomy). Additionally, my rapid strep test results have ALWAYS come back negative (that is, the test detected no trace of strep) even when it was later confirmed by throat culture that I did indeed have a bacterial infection.

That's why I need the full-blown throat culture when I have a very painful sore throat...just in case.

Now back to the point of my post of why I'm so angry. Here's why:

• The lack of the throat culture made me feel duped; the clinic's website was misleading.
• The healthcare worker I saw was not a doctor, and there was no doctor in sight. She was the only healthcare worker on call at the "clinic" (if you can really call it that).
• When taking my health history, the healthcare worker did not understand that CFS can affect the immune system. As far as I could tell, she didn't really even know what CFS was other than something that makes people tired.
• The healthcare worker did not believe me when I explained that my strep symptoms tend to be atypical. She merely told me that most sore throats in adults are caused by viruses. Well, duh.
• When the healthcare worker looked at my throat she said that she could see nothing wrong and told me: "My throat is redder than your throat." Seriously?! This person is telling me that her throat is redder than my throat?! Is that supposed to make my throat suddenly feel better? (My throat is red, for the record, but we didn't bother doing the rapid strep test.)

It's the last point that was the spoiled icing on the awful-tasting cake. I paid money to hear about my not-a-real-doctor healthcare worker's throat and to feel belittled. I'm angry because this entire farce was a complete waste of my time and energy, and my time and energy are precious. I'm angry because the healthcare worker didn't believe me. I'm angry because it shouldn't be this difficult to find a doctor to get a throat culture. I'm angry at the state of our healthcare system. I'm also angry because I'm still sick and am no closer to a diagnosis. (This last sentence can be taken on a number of levels.)

This experience reminded me how far we still need to go to educate everyone in the healthcare field...but that's too big a topic to address here.

I still have a fever; my throat still hurts; my body is still achy. But I'm a little less upset now that I've had the chance to vent.

It's time for bed.