Tag Archives: stigma

First Person Accounts About What It’s Like To Live With M.E.

Well-known law prof battles stigma of chronic fatigue syndrome by going public

For many who suffer from chronic fatigue syndrome, stigma is the worst aspect of the illness.

People suffering from the syndrome, also known as myalgic encephalomyelitis [M.E.], have been treated as malingerers and met with disbelief, according to Northwestern University law professor Steven Lubet. Many have been referred to psychiatrists.

“I am often essentially immobile, with other debilitating symptoms as well,” Lubet writes. “On days when no one sees or hears from me, it is most likely because I am housebound or bedbound. Sometimes it is impossible to manage the keyboard.”

All my fellow bloggers who follow this blog, are aware that I advocate for M.E. (Myalgic Encephalomyelitis).  When I come across, in my internet wanderings, some information that I believe will help others to understand what life is like when suffering with this chronic illness, I am forced to share it.

blue ribbon for me

I was struck by the “true-to-life” commentary by an M.E. patient, known as “Carol.”  She tells what her life is like since she came down with Myalgic Encephalomyelitis (M.E.).  After reading her comment at the bottom of the article, I decided to post it here.  It shows what the quality of life (QOL) is like when a patient lives with M.E. and includes family and friend relationships:

It is appreciated when anyone with a higher profile [Prof. Lubet] speaks out in regard to their experience with me/cfs. I so relate to the point about not being seen for a day or so because of being bedridden or homebound. It’s a delicate balance of coping, energy reserving, and prioritizing. I too acquired this illness in 2006, diagnosed by Dr. Bruce Carruthers in 2007. Up until now I have reserved most of my energy to work a week on week off jobshare but it is becoming more and more difficult. I see my house becoming more and more cluttered as I no longer have any energy to do even the important ( to me) tasks around the house. We eat out more often and I am less and less motivated to find something different to wear to work or make sure my nails are “done”. To the general public or unenlightened physicians this may seem like symptoms of depression, however I know that it really is just a lack of energy. Does anyone else have mental desires to do things but just cannot physically do them ? Support is always lacking, some friends and family have been pretty good, others that think you should be cured by now.. but there are some family that think I just don’t look after myself and that I suffer from depression. Very frustrating when I try to explain the difference as they claim to have read up about me/cfs and declare that I am just making excuses for not seeking a psychologist/medication to treat my “depression”. One of my children has chosen to “detach” from me because they just find me too negative ( because there are things I cannot do ) and an excuse maker. That my sometimes garbled words or poor memory just make me unlovable “until” I choose to seek help for my “problem”.

 

[Image from bingdotcom]

 

Second Video on M.E. (Myalgic Encephalomyelitis) by Prof. Jason of DePaul University

Dr. Leonard Jason of DePaul University in Chicago, has another video out that is as important or even more important than the first in my post, “New Video on M.E. (myalgic encephalomyelitis) Research by Prof. Jason of DePaul University.”

In this 2nd video, Dr Jason speaks about the “stigma” of M.E.  He explains it so clearly, that anyone not familiar at all with M.E., can understand the extreme and totally different fatigue suffered by M.E. patients as compared to a person who does not have M.E., and how they are viewed by the general public.

It’s only 9 minutes; but a very important 9 minutes for all M.E. sufferers and their family and friends and, yes, their employers as well.

A person with M.E. (child, teenager, young adult or middle-aged) realizes suffering in every facet of life; not only physically and medically, but also in all social, family and economic areas as well.

Please watch this video.  Thank you.