Saturday, August 29, 2009

Lack of support: Medical (Post by Kenny)

The following post is the first of several by my husband, Kenny. Thanks for reading! ~Alyson


Ignorance, it is a pervasive mindset that transcends education, and is found at many different levels when it comes to the topic of CFIDS.

Too many doctors and nurses lack understanding or education of this illness; which adds to the frustration and hopeless feelings of those that suffer from such a formidable disease. This of course is not a problem if this ignorance is due to a new disease; unfortunately, CFIDS is not so new that all doctors and nurses should not be well educated up to the latest research.

Sadly, this lack of knowledge is due to many medical experts incredulity that there is something genetically, chemically, neurologically or a combination of these wrong with the individual. This leaves the person suffering from this life altering disease with feelings of doubt.

Before she found her current doctor, other doctors told my wife for years that she was just depressed (and nothing else), partying too much (she did not drink or party), staying up too late (Alyson slept almost 20 hours a day sometimes), not exercising (when she did work out, she crashed and slept for days), or the worst, “it’s all in your head”. This is unacceptable and should not be tolerated within the medical field.

Doctors and nurses have a moral obligation to be empathetic and educated on rare and common illnesses.

If you are in this field, don’t blame the people or make excuses for questions you can’t answer, instead do research or refer him or her to someone that can help. Please, don’t assume or guess what may be wrong. That is a complete insult to these people’s intelligence.


cinderkeys said...

Thanks for the post. It seems that sometimes, a little pushback from healthy people goes a long way with doctors. Just the presence of a healthy advocate at an appointment can yield better manners from the medical professionals.

I once talked to a doctor who said her daughter had chronic fatigue syndrome. I expressed great sympathy and said I knew someone who had it, and it was awful. He mumbled something like, "Oh, maybe there's something to this."

What I wanted to say but didn't: Really? You believe me, who you hardly know at all, but you didn't believe your own daughter? Was your daughter a pathological liar before she got sick?

Jo said...

And what if it does indeed have an emotional origin? Does that make it any less of an illness? 'Just' depression? We know CFS is not the same as depression, just a few questions to a patient will reveal that - but 'just' depression? People kill themselves with depression. It is also a life limiting disease that robs people of so much.

This kind of attitude reveals the prejudices that many people still hold about both mental illness and CFS.

I am happy to say that in the NHS I have not encountered either for some time now. No raised eyebrows or mutterings any more.

Validation is extremely important when you are sick.

Way to go Kenny! Had you thought of starting a parallel blog?

alyson said...

Just a quick note to let you know that Kenny will respond to your comments in the next couple of days. He is a big fan of American football, so he's been very "busy" keeping up with his passion. :)

kenny said...

Thanks for the replies. It means a lot to me that everybody is so supportive of Alyson and what she’s doing. I haven’t thought about doing a parallel blog, but that’s a great thought.

cinderkeys said...

I second the parallel blog idea. :)

perpetualspiral said...

Hi Alyson, I was wondering if you & Kenny would be interested in having his posts appear in the WAMCARE newsletter? We have a section for writings by people who are caregivers/supporters of those with ME/CFS/CFIDs and are looking to fill the slots! Let me know if you guys would let us reprint his posts :)

kenny said...


Sorry for the delay in my response. Alyson and I are honored that you would like to post our writings. We give you permission to do so. Thanks again for all your support.


perpetualspiral said...

Great! I think we'll be using your "Thief" post for our next newsletter, which should be out in a week or two. I'll let you know when it's available online, or you can subscribe by emailing :D