They Don’t Understand

It may be impossible for anyone who has not experienced fluoroquinolone toxicity to understand what it’s like.

It’s difficult for the person who is going through fluoroquinolone toxicity to explain that EVERYTHING is going wrong; and it is even more difficult for those around them to understand.

It’s beyond most people’s comprehension that a commonly prescribed antibiotic, maybe one that they themselves have taken, can cause debilitating pain, exhaustion, loss of mental capacity, inability to move, etc. in their formerly healthy loved one.  Most people think that antibiotics are benign, so they are unable to understand that an antibiotic destroyed the health of their spouse, friend, child, parent, etc.  They think, “it must be something else,” or “the drug should be out of your system by now,” or, simply, “what are you talking about?!” when you tell them that all of your health problems can be traced back to the antibiotic that you took to treat a urinary tract, or sinus, or prostate, or respiratory infection.

They don’t understand that the loss of health is real, that it is severe, and that it may last a while.

They trust doctors.  They trust the system.  They trust that the FDA is properly regulating drugs and protecting people from dangerous drugs.

They may not understand exactly how drugs work, but they think that someone does.  They believe that if a drug wasn’t safe, it wouldn’t be on the market.  They think that it wouldn’t have made it through the testing process if it wasn’t safe and better than drugs that are already available.  They think that the FDA has done a thorough and complete evaluation of all drugs that are on the market, and that if fluoroquinolones caused horrible adverse reactions in most people, they wouldn’t continue to be on the market.

They think that all drugs have side-effects, but those side-effects are rare.

They think that adverse drug reactions look like allergic reactions, and they think that you should immediately recover when the drug is “out of your system.”  They don’t understand that adverse drug reactions can manifest as multi-symptom chronic illness.

They don’t understand how you could suddenly be unable to walk, or think, or do the things that you used to be able to do with ease.

The fact that Floxies “look fine” makes it even more difficult to understand what a floxed loved one is going through.

They don’t understand how the tests could show that you’re “fine” when you say that you feel anything but “fine.”

They think that you’re a bit crazy, and probably a conspiracy theorist, when you wonder if other people who are suffering from mysterious, chronic illness may be suffering from fluoroquinolone toxicity too.  You see Floxies everywhere.  They don’t understand that.

They don’t understand the ups and downs, the relapses and the bad days following good days.

They don’t “get it” because they haven’t experienced it.  They don’t understand because they haven’t had to.  Their perception of the competence of the FDA and the medical system hasn’t been shaped by getting poisoned by an antibiotic that is assumed to have “an excellent record of safety and efficacy.”

I didn’t understand anything to do with fluoroquinolone toxicity before it happened to me.  If it had happened to a friend, family member or lover, I wouldn’t have understood.  I wouldn’t have “gotten it.”  I would have believed everything that I wrote above about belief, faith really, in the system that is supposed to make and keep us healthy.  I did believe everything that I wrote above.  And if a loved one had come down with fluoroquinolone toxicity, I probably would have continued to believe those things.  I would not have understood.  It took getting knocked down myself to understand – to really see and comprehend what a mysterious, pharmaceutical induced illness was like.

Many try to understand.  There are some loved ones of Floxies who work very hard to understand and support their sick loved ones.  They research and advocate for their spouse, child, parent or friend.  They listen with caring, compassion and kindness.  They do their best to be supportive and understanding.  They are wonderful, and greatly appreciated.

Most people, even really good people, don’t understand though.

On some level, it has to be okay.  It’s perfectly possible for them to still love and support you, without really “getting it,” without really understanding.

In order to maintain the relationships in your life, I think that it’s necessary to forgive them for not understanding.

They can’t understand.  It’s too bizarre.  It’s too foreign.  It’s too strange.  It’s too upsetting.

They still love you.  And you still love them.  So forgive them for not understanding.  Forgive them for not understanding your pain, or anxiety, or immobility.  Forgive them for not sharing your feelings of anger toward the system that allowed you to be poisoned.  Forgive them for not understanding how a drug could cause long-term damage to you.

Forgive them because you love them, and they love you.

They probably miss the old you – just like you miss the old you – and it’s probably hard for them to deal with the sick you – just like it’s hard for you to deal with the sick you.

This whole mess of fluoroquinolone toxicity is hard.  It’s hard for everyone involved.  It’s hardest for the people who have to deal first-hand with the pain and suffering that comes with getting poisoned.  It’s also hard for those who love Floxies to deal with.

Forgive them for not dealing with your sickness perfectly.  I’m guessing that you haven’t dealt with it perfectly either.  I know I didn’t.

We all want understanding.  We all want empathy and sympathy and compassion from those whom we are closest to.

Even if you can’t get that empathy from those whom you are closest to, because they just don’t understand, it is healing to forgive them.  They can’t understand because they haven’t been through it.  But you can give them understanding and compassion, because you understand their perspective.  After all, their perspective used to be your perspective.  You can forgive them for not understanding.  They may never understand how you are feeling and what you are experiencing, and that’s okay.  It must be okay.  Because you love them, and they love you, and they just want you to get better.

We grow when we forgive.  We heal when we forgive.  Forgiving is probably even necessary for healing and growth… and love.  Love is healing and it is necessary.  Forgiveness of those who don’t understand, who can’t understand, helps you to keep your heart open to love.