PHOENIX RISING

TELLING YOUR STORY

This section of the website provides an opportunity for you to get something off your chest, something that is unique to you – the story of your journey with CFS.   Most people’s stories never go beyond themselves or their immediate family or friends.  Most people's stories, in fact, never even get to their families or loved ones. Not wanting to burden others people often soldier through the pain and frustration of dealing with this difficult disease without expressing themselves. Such a withdrawl, however, can increase ones isolation - and add another burden on top of that imposed by CFS. This part of the website allows you to unburden yourself of your story to a group of people that share your experience, that can understand where you are coming from, that can really ‘get’ what you have gone through.

Telling your story can be difficult. It is hard, after all, to deal with loss and many people with CFS have experienced great losses. Telling ones story, however, helps allow one to confront and accept the losses and difficulties CFS imposes on people. Passing one's story along will help others deal with their own experiences and, in turn, and their stories will help you deal with yours.

 It is a chance to have your story to make a real difference. It has after all been hard bought. CFIDS can be a brutal illness.  It strikes without warning – often to youngish people in the prime of their lives, sometimes stripping them of their financial well-being and leaving them emotionally as well as physically ravaged.  Its cause is unknown, its length uncertain, the treatments for it are mostly inadequate. Getting CFIDS is, I imagine, similar to being in a country that has been unexpectedly invaded.  All of a sudden the language is different, the road signs are new, the rules are changed.  Sharing ones story can help validate others experiences of CFS and provide them with  valuable information in dealing with this disease.  For people  who do not have CFS it can provide real insights into the experiences of those who have it  Creating an 'understanding' is important to the recognition of any newly emerging or controversial disease.  By documenting your journey you may make another persons journey a bit easier, a bit less complicated, a bit less lonely. 

In some unique ways our story is all we, as a group have.  Many of us are either not employed or fully employed.  We are often poor, dependent on others and devoid of significant possessions.  We often don’t have the accomplishments that others have, many of us are not engaged in careers, we’re not out writing bestsellers (…at least not most of us), we are often too sick to support or engage fully in raising a family.   In short many of us have generated nothing but ‘our story’.  This struggle is part of what we as a group will leave behind.  Our stories make up our unique body of experience and they are, I believe, mostly unknown. They are OUR precious resource. 

Everybody’s journey is different.  For some their family is a bastion of support, for others a source of trouble.  While some find financial and other help in governmental support groups, others find only frustration.  Some find help and understanding in the medical community, others only rejection.  Some can’t even get to the medical community.  The yourstory section is an avenue for any and all of it that you wish to share.

If you chose to tell your story it will be presented in full at this website.  It can be long or short. (Mine ended up being extremely long! Yours does not have to be)  It does not have to be well written.  It can include errors in spelling and grammar.  It can deal with any aspect of your experience that you wish.  It will not, unless it contains material that is inappropriate for a general audience, be edited. 

If you choose to tell your story please e-mail it to phoenixcfs@gmail.com.  I think these stories will work best if you provide a name you wish to be identified by, the date you got CFS,  the city you live in and your age. If you do not wish to divulge any of this information your story will be printed without it.  The different stories will be indexed by these parameters; i.e. mine would read 1979 -  Cort - San Diego/Las Vegas.  This will allow people to browse through stories with some similarity to theirs if they wish.  Please also indicate whether you want your e-mail address attached to your story.  If you leave it you might be contacted by others with questions or by those who wish to share similar experiences.  If you prefer to remain private please let me know. You may update or change your story at any time.

These stories will only be posted onto this website.  If any other use for them were to arise they would only be used with your permission. 

To read the stories on the website click here.