Something that most every floxie endures at some point is disbelief that they’re really suffering. The disbelief could be from a trained medical professional, a family member, friend or a loved one. It’s hard because other people can’t see or feel what we are feeling. The people around us can’t begin to comprehend what we go through on a daily basis and this can make life challenging for all parties involved. I’m sure this can happen with other illnesses as well.
Among the long term affects of FQ toxicity are joint/tendon pain/degradation, popping/slipping joints, collagen degradation, nervous system damage, muscle wasting, neuropathy, tremors, stabbing pains, burning pain, vasculitis, vision/hearing loss, coordination problems, fatigue, chemical sensitivity, heart problems and more. Very little goes unaffected. When you read the aforementioned list of issues many are not visible to the eye. The person suffering feels it to varying degrees but it isn’t something someone else can see. That doesn’t mean it isn’t there. Floxies who have gone through the medical system often get test after test that comes back normal or negative like I did. If they do find something it’s often mild and they’re told that it wouldn’t cause what they’re describing. This has happened to me also. That being said it doesn’t mean that it’s in their head. It is very real but the damage is often at the cellular level and therefore extremely difficult to see.
I remember one day years ago asking my husband to go for a walk with me. I told him that I didn’t want to go alone. His reply was no. I didn’t get to go outside that day because not only was I worried I’d fall I was concerned some part of my body would give out and I wouldn’t get back. Such is the life of someone whose body has been badly damaged by a fluoroquinolone antibiotic. Much later I brought this up to my spouse and he said with a look of sadness on his face that he just didn’t realize I was that bad.
When someone becomes chronically ill it’s important to remember that our loved ones may make mistakes in how they see us. I know my husband still saw me as the capable strong woman he married and no matter how much I told him he still had difficulty wrapping his head around the change. He was not alone as I too struggled with this. I also didn’t tell him everything that was going on because I thought who wants to hear that? There are so many things destroyed by fluoroquinolone toxicity that it would take a long time every day to list them so I didn’t bother. I might mention in passing something major but most times I said nothing at all. By not discussing all the issues I dealt with it made it easier for me to focus on living. After all who wants to dwell on the bad things? My silence made it even harder for those around me to understand what I was going through.
As the years have gone by the side affects of this class of drugs has become more widely recognized and with that more medical professionals have a better understanding of the damage they do. Even the FDA has recognized FluorQuinolone Associated Disability (FQAD) as a side affect of the medications. In the future there’s hope that it might be studied and ways to help those affected might be discovered. In the meantime what sets us apart from other chronically ill people is that we are on our own. Fortunately we have each other for support.
If you or someone you know is chronically ill please do your best to support them. Even accompanying them on a doctor’s appointment to show the doctor that you know your friend is truly suffering. For those going through this having others believe them is a blessing. We might be smiling and laughing in the company of others but inside we can be crying in pain. Please do not be upset if we leave a social gathering early or if we arrive late as it may have taken a tremendous effort just to attend. For some floxies just going out takes a toll physically. I’m very fortunate in that I continue to feel better these last few months but some days are still difficult. Please show kindness and compassion for others as we never know what someone else is going through. Not all illness and/or disabilities are visible to the eye. It’s important to me to state that despite all the difficulties floxies face; their personal health struggles, not being believed by the medical community or being told it’s all in their head they are some of the strongest, most resilient and wonderful people I’ve ever met. Their ability to fight through the pain, find humor in their condition, and their determination to get better is admirable and inspiring.
Please take a moment today to reach out to someone you know fighting a chronic illness to show that you care. Also remember that not all illness is visible so if you see someone park in a handicap space who doesn’t “look” sick remember looks can be deceiving so please be compassionate.
Yours in health, Betsy