2013-02-28-11.28.19-226x100

Posted by & filed under blog, Education.

*For the purpose of this article, I will be referring to Chronic Fatigue Syndrome as CFS and Systematic Exertion Intolerance Disorder as SEID. Please note: SEID is the proposed name change for CFS. More info on that here

 

For 15 years I have been told by doctors, specialists, teachers, family members, friends and significant others that I am not REALLY sick or that I don’t look as sick as I act. The only believer I had was my caregiver and mom. She saw my steady decline from athlete and straight A student to bedridden and almost unable to formulate words to speak. I went to so many specialists I stopped counting…most recommending cognitive therapy…aka THERAPY or visiting a psychologist. Conditions like depression, narcolepsy, OCD, Lyme Disease, Mononucleosis, multiple personality disorder, and just plan laziness were thrown at my from all directions for so long that I started to question my own sanity! Then I felt even more crazy for questioning my sanity which made me paranoid about being crazy in the first place… and all this time I was stuck in bed. It was a spiral that had grown out of control.

Through years of trial & error and finally leaving the country,  was correctly diagnosed with CFIDS, aka CFS. It took over 5 years, numerous specialists, uncountable medications and one bad kidney to get this diagnosis. Once I was diagnosed I thought the hard part was over. I was so wrong! Due to the stigma in the name “Chronic Fatigue” just about everyone wrote off my newly discovered syndrome, causing a major loss in friendships, relationships, jobs, etc.

Fast forward to February 2015… SEID (Systematic Exertion Intolerance Disease) is born from the Institute of Medicine (IOM) study. My first reaction…. OMG FINALLY! Calling it a disease instead of a Syndrome and getting national attention vindicates my years of failed explanation attempts. I AM NOT CRAZY!

I want to call up family members that have not supported my mom & I’s efforts to investigate my health, practitioners that fed me medications I didn’t need, specialists that told me there was nothing wrong with me, friends that never believed in my illness and even some of the general public that dismisses the name with absolutely no knowledge of the condition! I would love to give them the report with a smile on my face (and maybe a certain finger extended) and say I TOLD YOU!

While the name change is not a perfect one and the report does not yet encompass all the struggles I personally endured, and believe many CFS patients encounter, I do believe this is a move in the right direction. It’s AWARENESS that has caught the media’s attention. Whether the reports are accurate or not, it’s attention to a disease that has largely been ignored since it’s inception! The old saying “Bad press is better than no press” comes to mind.

Regardless of your feelings about the name, try to look past just the title and look at the implications for research, funding, backing, social legitimacy, treatments and insurance coverage!!!! I’m sure it will take time to figure out all the details, after all the government and medical agencies are big, rusty ships that take forever to change their course, but I am happy to hear they are at least aware that the direction of their ship needs to change.

Download the full report from the Institue of Medicine here

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4 Responses to “I Have A Disease…I’m Not Crazy! It’s Called SEID , CFS”

  1. Lynn M.Chiodo

    I have never so happy to hear a family member has a disease…but, you know what I mean! It does matter in so many ways as you mentioned above. And it helps relieve the emotional burden that can drain your energy when you need it for everyday tasks. I hope this will lead to lots of positive action ahead.

    Reply
  2. soofy

    *cynical mode on* I wonder when it was called CFS if people then cheered “we have a syndrome!!” *cynical mode o… neh I’ll let it stay on 😉

    also, Lyme and (chronic) mono aren’t thát far-fatched.. and I’m a fellow patient so I can throw it at you (again)

    Reply
  3. IRIS

    thank you for sharing your experience and empowering not only others with your journey but yourself as well your mom is a hero btw

    Have you written any further on your hospital experience in MX? My hubby & I are going to spend a year in the Yucatan anyway, our trip could just as easily start in TJ. All of this depends of course on Finances, doesnt it always? I’m on too many meds currently, I love that they were able to reduce or elimimate allopathic meds while supporting your system with healthy alternatives. I am proficient in Spanish, if you ever need help with Spanish translation, I’m at your disposal. Feel free to write or call when you have a moment . IN GRATITUDE, I Iris AG

    Reply
  4. Mark Hutson

    At least when you tell someone what is wrong with you they can’t say, “yeah me too, I’m tired all the time.” It helps to tell people that you have a disease, but it still isn’t very encouraging that after all these years all they (researchers, doctors, scientist) have come up with is a new name.

    Reply

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