Sunday, April 28, 2013

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.


alyson said...

I don't mean to hurt or offend people with this post. There are so many wonderful health advocates and supportive people out there who do not get enough credit.

I'm not writing to ask for pity or to convince people that my life is better or worse than anyone else's. I'm writing to show that even the most positive, optimistic of us can have a bad day. I'm writing so that people without chronic illness can better understand how things they say in passing might actually hurt more than help, no matter how well-meaning the intention was. I'm writing so that tomorrow I can start the day off fresh!

AM said...

I pretty much know exactly how you feel but I really don't have any doctors that believe me or are willing to investigate anything. I'm so tired of learning that something new is wrong with me and that everyone just thinks I make things up for attention. I'm going to lose my health insurance in November and am afraid that something bigger will show up then.

Hayley-Eszti Szucs said...

I completely relate to you. I struggle to accept that people especially those in the medical profession can't or won't accept it to be a genuine horrifically devastating illness, if we don't have them on our side, how can we stay hopeful. The way on the most part we are shoved to the side and told to get on with it, sickens me. I do hope that one day it will be as openly talked about and understood by the general public as it deserves to be, and that itself will then lead to greater support which is something we are lacking but need so badly.
Lots of love to you, Hayley-Eszti

alyson said...

Hi AM and Hayley-Eszti - Thanks for reading my blog. I am looking forward to the day when people with chronic illnesses don't have to go from doctor to doctor for years before finding an ally and getting a diagnosis!

Kendra C said...

Hi Alyson,
I found your blog and think it is an incredible resource for women suffering from chronic fatigue syndrome/ME. I appreciate that your blog is giving women with this issue important information and resources.
My name is Kendra and I am the Outreach Coordinator for Womens Wellness Publishing. I want to let you know that our lead author, Susan Lark, M.D. has just written a fantastic new book, Dr. Susan’s Solutions: The Chronic Fatigue Cure.
Her new book is an incredibly helpful guide to healing from chronic fatigue syndrome/ME and restoring your energy, vitality and joy of living. Alyson, you are not alone. Many people suffer from the same condition you do.
In the book, she shares her all natural treatment program that has helped thousands of her patients eliminate their debilitating symptoms. Most of her patients have been able to heal from their chronic fatigue and restore their energy and vitality without the use of toxic drugs and hormones with her all natural treatment program.
Dr. Lark posts wonderful health features for women on our Womens Wellness Facebook page and she has many devoted fans.
Her book also has great information on the major causes of chronic fatigue, the latest medical diagnostic techniques and the pros and cons of drug therapies. It is an all around great book and we really look forward to sharing it with you.
We'd love to have Dr. Susan's Solutions: The Chronic Fatigue Cure featured in your blog. We would be happy to send you a copy of the book and provide any additional support that you would like.
I look forward to hearing from you! I can be reached at my email address,
Best regards,