Today is Chronic Fatigue Syndrome Awareness Day, something that means a lot to me. In case you didn’t know already, I have CFS. I don’t keep it a secret. I feel it’s better to be open about my illness than to hide it. I know my limitations, but I also know what I’m capable of.

Do you like my blue ribbon? I support the Blue Ribbon Campaign for ME/CFS Awareness. Chronic Fatigue Syndrome is known by many other different names, the most common of which is Myalgic Encephalomyelitis. It makes a handy acronym for awareness purposes: ME. It also seems a lot less fake than Chronic Fatigue Syndrome.

One of the most frustrating things in the world for a CFS patient is the complete breakdown of the medical profession when we try to discuss Chronic Fatigue Syndrome. Despite the fact that CFS has been recognized by the CDC and Social Security, and despite the fact that there is medical evidence that there are biological differences in people who have CFS and people who do not, many people – including doctors – think it’s a fake illness.

We’ve been called lazy. Hypochondriacs. We’re “just” depressed. “Everyone gets tired.” Yeah, well, not everyone gets tired like this. It took me nearly eight years to figure out what was wrong with me. Eight years without a single good night’s sleep where I would wake up feeling refreshed. Not one. OTC and prescription sleeping pills fail to touch me. I’ve taken 50mg of Benadryl and remained awake for three hours. (The same dose knocks my husband out for a full eight hours, working within minutes, and he’s groggy in the morning.) Ambien, Lunesta, Rozerem – even the expensive formulary drugs did nothing for me.

Then I got a doctor who would listen to me. My psychiatrist – though he’s not treating me for CFS, he’s treating me for anxiety. I explained my sleep deprivation and how I’d literally tried everything on the market to help me sleep. He prescribed me something that would help my anxiety and my insomnia – Remeron. The very first night I took it, I slept the whole night through. For the first time since I had mono in 1999, I woke up feeling refreshed in the morning.

Since then, the Remeron stopped working for my sleep, so I’ve switched over to Trazodone. Neither drug is marketed as a sleep medication, but that seems to be what works for me. Off-label use is amazing for people like me with hard to treat symptoms.

Symptoms of Chronic Fatigue Syndrome – and I’m going to list the ones that I specifically experience – include unrefreshing sleep, post-exertional malaise, poor memory and concentration, joint pain without swelling or redness, unexplained muscle pain, headaches, (occasional) lymph node tenderness, and sore throat. Those are the primary symptoms. My secondary symptoms include dizziness, chronic cough, pain in the chest, dry mouth, irregular heartbeat, limbs that feel “heavy,” mood disorders, hypersensitivity to light, and hypersensitivity to heat.

And I’m one of the lucky ones. I can work a (mostly) full time schedule. I’m a damn good writer. Post-exertional malaise for me is getting knocked out of commission for three to seven days because I stupidly attempted a full day of shopping on Black Friday – which is what finally led me to research what was wrong with me – or having to literally crawl up the stairs after attempting more than 5 minutes of aerobic exercise on our Wii Fit. (I can do yoga for longer, thankfully.)

People who aren’t so lucky find it difficult just to get out of bed. Walking down the stairs can be enough to keep them bedridden for the following week. These people can’t hold down jobs, not even working from home like I do. It takes everything they have just to feed themselves and attend to their very basic needs. The worst part is that friends, family, and doctors may not even believe that they’re as sick as they are.

The main problem is that CFS has no cure. Medical research has not yet found any biological indicators to identify CFS, so there is no single test to prove someone has this chronic illness. (It’s unlikely they will find any, as there are no federal research dollars spent on this disease.) Right now, diagnosis is made by identifying symptoms and ruling out all other possible causes. It makes doctors uncomfortable, so many of them ignore it and write it off as something imaginary. After all, if they can’t do anything about it, how can it be real?

I’m Not Lazy I’m Sick Shirt by twilightsun

My own primary care physician, when I broached the subject of obtaining a formal CFS diagnosis, told me, “There’s no test for CFS and no way to treat it.” And the way she said it left no room for discussion. Looking for a more sympathetic doctor, I fear, would be a wild goose chase, so I do my own research and have my symptoms treated the best I can. I don’t know if my psychiatrist believes I have CFS or not, but he’s willing to treat my inability to sleep and try to heal my mind in order to heal my body. (He claims that one of his former patients “graduated” from therapy and found that his “untreatable” congenital hardening of the arteries was cured. There could be hope for me.)

Please help spread the word – Chronic Fatigue Syndrome is real. Real people have real suffering. (CFS patients have a quality of life similar to patients with AIDS, multiple sclerosis, and end stage renal failure!) Tweets, Diggs, Stumbles, blog mentions are all appreciated. Because you know someone who has CFS. Me. Thank you.

Updated:

My doctor gave me orders to test my blood for Epstein-Barr (EBV) and Lyme Disease! I may have something tangible to show for my suffering.

A new social network for CFS patients: CFS Survivors
Moms with CFS at Type-A Mom

May 12 is Chronic Fatigue Syndrome (CFS) Awareness Day is a post from: Christina Gleason - Founder of Phenomenal Content LLC

I am a hard worker and an overachiever. I take pride in my work. I happen to have a chronic illness. Two of them, actually. You wouldn’t know it by looking at me when I’m having a good day, and maybe not even when I’m having a bad day.

I hope that, by showing the world what I can do, I can help dispel the stigma attached to people like me, people with disabilities. Some people are visibly disabled; you can tell because they’re in wheelchairs, or using guide dogs to get around town.  Many people will judge them just by looking at them.  There are other people who don’t look sick at all, people with invisible disabilities. Many people will judge them, too, whether or not they are aware that a disability exists.

I have Chronic Fatigue Syndrome, also known as CFS. Some people, even doctors, don’t believe this is a real illness, even though it is recognized by both the CDC and Social Security. Let me assure you, this illness is real. It’s not just about being tired all the time. It’s about a bone deep exhaustion that most people will never experience or understand. Some people are bedridden, and others are able to carry on like “normal” people during the day before crashing at night, barely able to move.  It can take days or weeks for a person with CFS to physically recover from exertion, both mental and physical. But that doesn’t mean we aren’t capable of working like anyone else, so long as reasonable accommodations are made to allow for our “bad” days. We are not lazy. We will work to the best of our abilities, when given the chance. Freelance work is excellent for people with mild to moderate CFS, and telecommuting can allow us to work 40 hours weeks without anyone knowing we had to take a two hour nap in the middle of the afternoon to recharge our brains.

I also have Generalized Anxiety Disorder and Depression. Yes, I have a mental illness. I have never made a secret of this. I am not ashamed of my mood disorder. It is generally well managed under my doctor’s care and current treatment plan. I am not crazy. (Although I may joke that I am from time to time.) There is some ridiculous stigma against people with mental illness, and it just isn’t fair. As my doctor often jokes with me, his patients are often far healthier and more sane than “normal” people, because his patients are more self-aware and taking corrective steps to become better people! Chances are, you know someone who struggles with depression, anxiety, or bipolar disorder. They may not share that with you because they are ashamed, or have lost relationships with people who didn’t take the news well. They may or may not be in treatment. They need your support and understanding.  We are fully functional members of society who just happen to have some issues with brain chemistry.

So now you know more than you probably wanted to know. But it’s out there. It was out there before I created this page, because I’ve been open about it in my blogging and in social media.

I’m not a celebrity, but I hope I’m public enough to change the minds of a few people when they think about chronic illness. Feel free to contact me for public service campaigns or media opportunities related to advocacy for people living with chronic illness.

Advocacy is a post from: Christina Gleason - Founder of Phenomenal Content LLC