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.

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22 thoughts on “They Don’t Understand

  1. Heather Rayne November 12, 2014 at 8:00 am Reply

    Fantastic! It is a familiar feeling for me having gone through depression and anxiety. We just can’t expect true understanding from those who have not been there.

  2. Traci Walt November 12, 2014 at 8:26 am Reply

    I am so glad I read this today, very much needed

  3. Jamieson November 12, 2014 at 8:27 am Reply

    Couldn’t have been written better, or at a better time

  4. rainbowheartbeat November 12, 2014 at 9:13 am Reply

    Reblogged this on rainbowheartbeat and commented:
    As someone who has been down that road this year and fighting my way out all while trying to educate my friends and family on floxing I feel this post..big time.

  5. davidandeowyn November 12, 2014 at 10:00 am Reply

    After 2 1/2 years, I’m finally about 85% back to normal. Thanks for sharing how we all feel!

  6. B November 12, 2014 at 10:16 am Reply

    Best said ever !
    I wish I was able to express it like this.
    I may use some of these words on my blogs , so that my friends may understand better what I have been experiencing .

    We must understand they do not understand.

  7. Ms. A November 12, 2014 at 11:04 am Reply

    Beautifully said Lisa! Anytime anyone in my family, or someone close to me has an illness, I try to research it to see what I can learn. I just wish they would do the same for me, to try to get a better understanding. I still find it very difficult to explain, without getting frustrated and upset.

    Thank you!

  8. Lisa Banaszynski November 12, 2014 at 12:42 pm Reply

    Beautiful article. I was only hit with tendon damage, but as I learn from other peoples stories about the more devastating effects, I want to warn others. Yet, I somehow feel they don’t understand the far reaching scope of damage that can be done by this class of antibiotics and how many that may be hurt but unaware of the cause. Since it can hurt a person in so many ways it is so hard to explain. They understand to a degree, yet it seems they don’t really get the magnitude of it. Maybe because its all just so crazy……unfortunately it is all too real. When I think of the magnitude of it all – it just blows my mind!

  9. Lisa Bloomquist November 12, 2014 at 2:29 pm Reply

    I’m so glad that it resonated with you guys! Thanks for the lovely comments!

  10. Lisa Bloomquist November 12, 2014 at 6:05 pm Reply

    I think that there’s a difference between not understanding and not supporting. Even though I don’t think that my loved ones really understand my floxing experience, or my floxie perspective, they have always been wonderfully supportive of me throughout my journey. They never disregarded my pain. They never dismissed me. They never made me feel bad about any of it. They were supportive beyond the call – and they continue to be. They have been more supportive, and understanding, than I likely would have been if the tables were turned. I am immensely grateful for all of them.

    For those whose loved ones have not supported them, or even betrayed them, through their struggle with fluoroquinolone toxicity – I am so, so, so, so sorry for your pain! Going through being hurt by people who you love is beyond painful. I send you my virtual hugs and sympathy. That pain and grief on top of the pain of FQ toxicity is horrible. xoxoxo to you all!

  11. Nick Cole November 13, 2014 at 4:22 am Reply

    I have shared your post in the psych drug damage support groups. While the drugs that did the damage aren’t the same, it seems the outcome is: feeling and being misunderstood- and so this article speaks to what we all feel, irregardless of what drug damaged us. And you are correct, there is a HUGE difference between not understanding and being unsupportive, cruel, disbelieving. The latter is much harder to forgive. Thank you for this article.

  12. Brooke Keefer November 14, 2014 at 2:03 pm Reply

    I get “that look”. You know “that look”. My doctors, family members, friends, even my naturopath gave me “that look” time and again. “That look” is what you described here, Lisa. I truly believe 90% of these folks WANT to understand. However, it’s not like telling them I have cancer or some other disease. They can “picture” that. Floxing has no picture attached to it, because floxing is so difficult to explain, or at least the symptoms attached to it are. In addition, like you mentioned, we generally look normal/healthy, which I found made it more difficult to convince people I was floxed. I hope there comes a day when a floxie tells someone, “I have fluoroquinolone toxicity disorder/floxing,” and the person on the receiving end says with visible empathy, “You poor thing. That is an awful condition.”

  13. Terry Fernandez November 21, 2014 at 1:48 pm Reply

    I believe a young man of 30 who is like my son is on the front end of this. He’s been very ill, and just received test results indicating kidney disease/failure. He’s overwhelmed, hurting with terrible headaches, body aches, fever, itching, and dehydration, to the point of almost not being able to get enough to rehydrate and is having difficulty urinating which is dark yellow/brown when he does. He was sick with a sinus infection and aside the symptoms of this; all the rest has piled on since starting Levoflixacin 500mg and I was telling him to take his medicine.. until two days ago, I said stop, get to a real doctor and let’s go from there. I have read a head swimming amount of information about this today and being a person that deals with severe chronic pain who is not understood by many, I know how he feels and will continue to feel if this persists.. he simply is a go getter than never stops. People at work have already jibed “I’ve never known someone to miss a week over a sinus infection” He’s young, healthy, keeps himself in great shape at the gym and he’s weak and looking drawn, ill and tired. I hope I’m wrong about this and he has a terrible bacterial infection caused by this antibiotic. At this point, with all indicators, I’m not believing this will be the case.

  14. Michelle Amrit Kaur Gause February 22, 2015 at 1:45 am Reply

    The worst is dealing with doctors who don’t understand! I’m over 7 years into this, and I am very advanced in my conditions. I even attempt to tell doctors about what is going on with me and their eyes simply gloss over and they tell me to go elsewhere. Even if it is their “specialty,” they simply don’t know what to do because of so much that is going on all at once. I am continually having to research my symptoms and having to go to my doctors to suggest to them what to next test for because they simply do not know at this point. I have multiply autoimmune conditions, multiple immunoglobulin deficiencies, multiple organs that are inflamed and trying to shut down… That’s just a few of the issues. We desperately need to get an umbrella term for our syndrome that overlaps all these conditions- whether it is Fluoroquinolone Toxicity Syndrome or something else, we need to have something in which the doctors will FINALLY recognize as being this huge beast that we are all dealing with! It’s not just a matter of taking the antibiotic and getting one side effect and it is over…. It’s only the beginning and they need to wake up to that!

    • Lisa Bloomquist February 22, 2015 at 7:42 am Reply

      Thank you so much for your insightful and poignant comment, Michelle! I think that acknowledgement from doctors is quite healing. It’s not just emotionally and spiritually healing, it may even be physically healing because when you have to fight to be recognized constantly, you experience stress and anxiety and those things can make your cortisol levels go up and can make you feel worse.

      Our medical system isn’t set up to treat multi-symptom, chronic, iatrogenic illnesses. It’s set up to treat symptoms or pieces, not the whole body. It leaves people with multiple problems without help. I’m so sorry that you’re in a position where you are without help from the people who are supposed to be able to help you (doctors)!

      Have you been helped by any “alternative” medical practitioners? Acupuncturists, Chiropractors, Nutritionists and even Functional Medicine Doctors seem to look at people more holistically, and seem better equipped to help floxies.


  15. Marian Grant May 30, 2016 at 6:41 pm Reply

    I live with a husband that was given Leviquin last May, and since last May, I do not even know my own spouse anymore! He is constantly in pain. He is constantly soiling the bed! He is constantly feeling tired and gave out all the time! He is constantly falling and me trying to get him up! About 2-3 weeks after taking this thru Iv every 4 hours for six days, his kidneys started to fail. He never had to go on dialysis, but his numbers have only came up to 50! The regular number is 90 or above! His eyesight is hazy all the time. He has diarrhea all the time, I’ve had too throw away a lot of King sheets! He has no energy at all! He’s just a totally different man than he was before!!!!!! This drug is poison, and they just keep on and on giving it on a daily basis! All I can say, this drug has changed my husband forever and my life forever! His breathing has gotten bad now, and his oxygen level won’t stay up! We’re both living in total hell, because of this one horrible drug!!!!! He’s a severe diabetic and they had too take him off all his oral diabetic meds and all his heart meds including his fluid pill! Well, what if fluid builds up around his heart????? All of this is like a death sentence, and I wouldn’t wish it on anyone at all! Yes, our marriage is strained because he’s a totally different person, but your vows- for better or worse and in sickness and health!!!! Well, the makers of this drug should havt to go thru all of this, and then you’d see how fast it goes off market!!!!!! I’m sorry, but had too be honest! This drug kills!!!!!! Yea, I feel his days are numbered because of this one drug that was supposed to help him, not kill him. I have first hand on what this monster will do. Yes, evil monster!

    • Lisa May 31, 2016 at 10:17 am Reply

      I’m so sorry for everything that your family is experiencing, Marian! These drugs absolutely ruin lives, and I’m so sorry for everything that you and your husband are going through. The drug makers should absolutely pay for all the pain they have inflicted. I hope that things get better for your husband!

  16. Jayne Baude June 23, 2017 at 6:11 pm Reply

    So well written and so true. No one, unless they are suffering from the side effects, truly understand what it feels like.

  17. Chris October 31, 2018 at 11:13 pm Reply

    Amazing and can be applied to any medication induced injury too.

  18. Bonny December 11, 2018 at 4:58 pm Reply

    Thank you for your words. It’s amazing how your words seem like they were my words. Your journey, my journey….so similar. It feels great to know that someone actually “gets” me and my situation. Thank you for your openness and honesty. Please take care as you continue to heal. ♡

  19. Somer December 12, 2018 at 9:39 am Reply

    Thank you for this blog! I have was given Cipro in July of this year. The things I’ve gone through since have been incomprehensible to me, much less my family. My husband is so supportive but he says himself that he can’t understand what I’m going through. All he know is that five months ago I had a bad a case of food poisoning and I haven’t been the same since. Your words are exactly what I’ve been feeling. The isolation, the mistrust, the fear, I’ve even been called a conspiracy theorist because of this. Thank you so much for showing me that I’m not alone!

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