We keep hearing about fake news lately so I wanted to take a minute to write about truth. Those of us who’re chronically ill and battling daily pain and physical struggles do our share of faking it. I don’t mean this in a bad way like the connotation associated with fake news. People hear about fake news and are disgusted and who can blame them? But I want to explain what faking it means to those of us struggling with our health.
Before I get into that I need to mention that those of us who’re floxed often don’t have doctors that believe our health struggles are real. Many are even referred for psychiatric consults. Things are changing since the FDA actually defined our condition calling it FluoroQuinolone Associated Disability or FQAD for short. But many doctors still won’t admit the drugs they’re prescribing cause the pain and other health issues we have even though they are written in the package insert under side affects. Not having doctors believe us often leads to family and friends who deny our condition exists too. For those of us injured this is frustrating to say the very least. When we are the most in need of support from our loved ones and our doctors we are denied. I’m fortunate to have family and friends who believe and support me but I have had my fair share of doctors who didn’t. As a result I removed myself from their care and kept searching until I found compassionate ones who listen.
As a result many of us who are floxed fake being well. We put a smile on our face and when people say how great we look we thank them. We don’t tell them how much effort it took to shower, and get dressed just to see them or that we’ll pay for it after by spending the rest of the day in pain or in bed or both. And in some cases floxies can be bedridden for days after one simple outing. I again count my blessings because I am past this point of fatigue and feel I have improved slowly but steadily for the past couple of years but I remember it well and I know countless others who struggle to perform the simplest of daily tasks such as washing their hair. Sometimes these small tasks cause that individual to spend the remainder of the day resting or in bed.
This reminds me of a time when I was having a very rough couple of days with fatigue, nausea, and headaches; in other words the works. I saw my best friend who I’d tell anything to and she asked me how I was doing. I replied that I was good and my husband looked at me and said really? Why don’t you tell her about x, y, z and he started listing my ailments. My response was; oh she doesn’t want to hear all that. And she looked at me and said “yes I do!” I was faking being well and my husband called me out. But this had become a part of my life so it was hard to admit sometimes that I wasn’t.
This brings to mind another issue. I had so many things going wrong with my health that I’d only tell my husband about the most troubling one. As a result he didn’t really understand how sick I was. I kept thinking that these things would go away and as any floxie knows the myriad of symptoms we endure changes endlessly. They can last seconds, minutes, hours, days, weeks or months but they are ever changing and cycling in severity and duration. So I’d mention that my Achilles hurt but not that my hands were numb or not functioning, that my legs felt like cement, my shoulders ached, my muscles were in constant spasm in one spot or another, and/or that I had vibrations and tingling in places. So he didn’t know how bad off I was. I reached a point where I realized I needed to tell him more so he would know what I was going through. Then I began telling my close friends too so they would understand. It was difficult opening up and speaking the truth but it was important too. I’m a mother so I was the caretaker. Needing to be taken care of was humbling and difficult for me but I had no choice. I had to face my truth and let others know too.
I’m quite sure that all of us with chronic health conditions no matter what caused them have done our fair share of faking being well or if not "well" then at least okay. So I ask you today to think about this; what’s your truth?
Yours in Truth,