Recently a fellow chronically floxed person posted a very apropos link on Facebook.  The link was to a page from our friends over at Health Rising, Finding Answers to ME/CFS and FM.  The article was entitled “Just Be Positive!” Toxic Positivity, ME/CFS and Fibromyalgia.   It is well written and frankly, speaks volumes. After I read it, it prompted me to write a quick article that focuses a bit more from the Chronic FQAD  persepctive.

Let me throw in the caveat that if you are newly floxed, let’s say two years or less, it’s probably best that you pass this article over, especially if you are in a bad space emotionally.  Seriously. 

Every few days I get a new contact from a floxie that has been suffering chronically for several years, some of them decades.  As a matter of fact, that demographic is the predominant visitor that comes to my website and hangs around. 

When the situation arises and I have the opportunity for additional interaction with some of these individuals a common thread of frustration emerges. I find that many of them are looking for validation for their negative feelings.  They are often angry, frustrated, depressed, remorseful, full of regret and often just plain pissed off.  These emotions are the spectrum of feelings that are commonly felt in those who are long term or chronic sufferers.

Hope, The Caveat

Before you wonder where I am going with this, let me throw in the caveat that, there is no denying that hope is powerful and necessary.  For me, over the last twelve years, I don’t know how many times the only thing I could do was just hold on to a very fragile thread of hope while experiencing very dark times.  I have faced death three times at the hands of the FQ’s (1,2,3) over the last several years, so I know…all I can say is that, I know.  

Having said that, it is interesting to note that very rarely, if ever, do I get industrial strength level of frustration from a newly floxed person.   To them, they are still coming to grips with shock and awe of a new reality and frankly, although they are justifiably upset, have not had the time to process the deeper, PTSD level, hard core range of emotions that comes with long term chronicity.  

For a long-term chronic sufferer, this is where things get a bit blurry.

It seems that for each chronic sufferer there is a fine line between validation, true hope, and those commonly seen sanitized stories or messages that border on toxic positivity.   Many times, people, especially those who are not veterans to the depth or length of suffering that the FQ’s can cause, have difficulty understanding this level of frustration.  They make the mistake of thinking that you can make long term sufferers be positive or they just dismiss the long term sufferer as bitter. Let me try to unpack this a bit. 

Although I wish everyone would heal from an adverse event to the FQ’s, the truth is that many don’t, and stats I have collected unfortunately show this.  It is not a popular message, just bluntly true, and yet another reason why these horrific pharmaceuticals shouldn’t be handed out like candy. 

Visitor and poll demographics that I have collected show that there are so many who took a hit from the FQ’s, then believing to be healed walked away; Some announce recovery and even others claiming to have ‘figured out’ the healing process.  Then, in an unfortunate twist of events, something goes wrong and they return.  The time span varies from months to years.  Either way, the dark realization sets in that many of the recovery stories that we hear were/are inaccurate, very inaccurate.  They unfortunately don’t reflect the true reality.  

The gravity of the situation is that for a lot of individuals, late effects, or delayed adverse events resulting in long term chronicity is more of a reality.  Dealing with the emotions that come along with this living hell is tough to say the least, and that is one of my main points. 

Well Meaning But Misdirected Advice

Although I don’t visit the various floxed groups on social media like I used to, when I did visit, I would see examples or forms toxic positivity directed at chronic sufferers on occasion. It usually went something like this, a long term floxed person would make a comment about the soul wrenching heartache they have felt while enduring years of setbacks and, frankly, insurmountable emotional and physical pain.  Instead of receiving validation for these emotions, the well-meaning positive ‘fairies’ would swoop in with advice.  These were usually folks low seniority so to speak.    Examples of these well-meaning advice tropes are: 

  • Positive thoughts to generate positive realities, (“Just ell yourself you are going to feel better.”)…yeah? ah, no.  
  • Treatment advice, (“I have found the reason for floxing!  All you need to do is start taking magnesium!”)….The veteran floxie has heard it all, so it better be good, real good. To be blunt, if the advice giver has been floxed less than six months they better keep their pie-hole shut about telling others what to do, lest things get real violent.  I don’t care if you are an M.D. or have a PhD in biology. Seriously, in the last twelve and a half years I have heard it all.   
  • Dismissive statements or caveats, (“Not all floxies are this bad,” or “She had a particularly bad reaction…”)…These statements just frost my cookies. It is usually done to blunt the negative effects of expressing valid negative emotions. In other words, an attempt to keep the really messy scary stuff hidden away, out of sight.  Guess what?  Floxing is really scary and messy.  Hiding the reality doesn’t make it go away.

Now don’t get me wrong, most of these are offered up by well meaning individuals.  Unfortunately, they can’t even comprehend the head-space the recipient is in. 

Email From A Chronic Floxie

This led me to a search for an email that I received last fall while I was reeling from the symptoms of a CSF leak.  Unfortunately I did not respond to her at the time but I did read the email.  I usually read all emails I receive. Anyway, she spoke with such candor to this topic that I re-contacted her and got permission to reprint a few excerpts from her email (I changed her name of course).  

Lynn, a former nurse and now a chronically floxed individual candidly shared her feelings in her email:

“I never realized how evil these drugs were.  I was used to seeing side effects from medication at work, but this was a whole new level of understanding. When I first became floxed I gravitated to stories of healing.  As a matter of fact, I was scared and went out of my way to avoid listening to those who had been battling FQAD for a long time.  Shameful to say, I even complained when I thought someone was being too negative.”

She goes on, “I ate healthy, avoided all prescriptions and shunned negative emotions.  I even paid money to a high-priced naturopath who claimed to have treated floxed people before.  After several months I started healing, and after several more months, I felt good enough to go back to work.  I proclaimed myself recovered and walked away, chalking it up as a bad nightmare. Then the unthinkable happened, after a year the symptoms came roaring back.  I could never figure out what I did to trigger their return, if anything.  I really don’t believe I did anything.”

“When I reluctantly came back searching for more answers my whole perspective had changed.  I realized that my previous dismissive behavior before was motivated out of fear.  Worse yet, being an RN I thought I had it figured out, that somehow I was more knowledgeable than most. I didn’t realize that my behavior was having the opposite effect on those who were really suffering.  I viewed those who were really suffering as a minority.  Even worse, to the outside world and other medical personnel I was sending the wrong message.  I was telling them that the FQ’s weren’t really all that bad.  I was sending the message that they could be beaten, if you just really tried.”

One poignant aspect of Lynne’s email, and it is something that I deal with all the time. She wondered how many people don’t even realize their long term problems are the result of taking an FQ? Even those folks who knew they had an initial adverse event, but then thought they healed.  The numbers are probably staggering.

Emotions

Lynne bravely went on and with candor detailed her psychological battle dealing with the negative emotions, including depression, anxiety and anger.  Emotions that weren’t as prevalent her first time around. She, like many, has been battling FQAD for several years now and is receiving regular counseling for PTSD-like symptoms.

It is unfortunate that I receive variants on this type of email on occasion from those who didn’t get better, from those whose recovery didn’t proceed like expected, or from those who were thrust back into this hellish reality after a perceived escape.  

You get the idea.

For many, they become unable to express their emotions and the sense of isolation becomes unbearable, which just compounds the problem.

People do feel isolated because of what this damn drug has done to their bodies and the collateral affect it has had on your homes, jobs, marriages, relationships, and families. 

I once heard someone said that true empathy is getting down in the hole with the suffering person, instead of shouting positive messages from the edge.   Boy, can I relate to that!

So, if you are down in that hole, let me assure you that you are not alone.  

You are not alone in your grief or anger.  You are not alone in your sorrow or despair. I have walked a similar path, and so have many more.  Please know that you have friends in this battle and it’s healthy, natural and necessary to feel the negative emotions brought on by being disabled by these drugs. 

For me, I have learned to cope with these issues through my faith and focusing on the blessings that I have in my life.   Even then it is still hard and some days, really hard.

One thing you won’t get from me is false promises. I won’t blow smoke at you and promise you that it’s going to get better. I won’t lie to you like that. 

But I can tell you somethings that I know to be true. First, despite your disability, you still have self-worth. And secondly, something that I have learned and seen over the last twelve years; You will become stronger in your weakness.

This I know.  I can’t fully explain it, but I have seen it time and time again.  The human spirit and the will to survive still amazes me to this day.

Just know….you are not alone.

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