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you must not want to get better

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Posted 9/30/2015 9:29 PM (GMT -5)
Has anyone else had someone say this to them?

I'm a music teacher and one of the students I teach is an infectious disease doc. He stayed after class on Sunday because he wanted to inquire about my treatment. I was so tired and weak after a day of teaching that I didn't have the wherewithal to ask myself if I was comfortable with the situation. He ended up staying for about an hour, and told me such things as my treatment is wrong (I should not be on the Byron White protocol and my doctor is not taking my illness seriously enough... I ought to be given IV antibiotics and hospitalized if necessary) and that there's no reason for someone as young and vibrant as me to be so ill so there must be some part of me that wants to keep myself sick.

I'm only realizing now how much the whole thing spun me out.

I am by nature a reflective person and can't help but consider ideas presented to me. I'm also in such a vulnerable state at the moment feeling so sick that I think I'm just a sponge for what people are telling me about what I ought to do. But I think that everything he said may have just basically been poisonous thinking for me and the thing to do is not consider them too much longer.
Posted 9/30/2015 11:00 PM (GMT -5)
Yes, though I can't recall examples at the moment, I'm sure I have. I've also been met with the "you should be better by now's" as well. The two appear to be on opposite ends, but they're about the same thing honestly.

But, yeah, and I'm sure most others have as well.

That's the way. It's not enough to be sick, but to deal with all the crap from others as well. Funfun.

Seems you've already found the answer to the problem though - say **** it. Kid's bout to be another one of those doctors. eyes

So, what's his opinion worth? Lol.
Posted 9/30/2015 11:11 PM (GMT -5)
Thanks Antonio! Glad you don't think it's an opinion I should value too much. Yeah I think I just need to try to let it go. I appreciate the support! What he said took hold a little.

He's already one of those docs maybe.. He's in his 60s, twice my age.. A pretty celebrated doctor so I'm told (by him lol)
Posted 9/30/2015 11:23 PM (GMT -5)
ingore it , i hear all the time " i dont understand why your not getting better, you improve you exercise and then your in bed again, then you seem fine and your in bed again" no one around me understands herxing or anything that we really go through even though iv improved an unreal amount since mid april, no 1 will understand chronic lyme and co infections unless they experience it , and i wish that on no one.
Posted 10/1/2015 4:02 AM (GMT -5)
Yes, marigold, defo ignore it!

I don't know about you but those comments are the ones that I have to be really careful don't eat at me. They kind of invalidate what your going through, and that's not fair.

As a music student how would he feel if you told him he ought to play much better than he does? As a teacher myself I know not one of my students would like it.

I don't think folks really appreciate what lyme does to your self esteem, but regardless of lyme or not a little tact?empathy? would not be too much to ask would it?

Don't let it get to you!!
Posted 10/1/2015 7:36 AM (GMT -5)
It's just terrible. It really denies your experience and everything you are going thru. Not to mention questioning your will to get better, which is the ultimate insult. As if you aren't trying hard enough. Plus not everyone can handle iv abx.

I haven't had anyone say it to my face but I have no doubt some people must question my experience and the degree of seriousness of my disease. Well actually, now that I think about it, last time I saw my internist he said I should get off all meds, that I'm a healthy young man and just need to start living life. He just has no idea how much this disease has nailed me physically and impaired me in the neuro-cog aspects. If I could transcend these symptoms and live my life, trust me, I would. I've tried.

It's very hurtful to be told such things, people don't realize how hard we try and how much we want to get better. When you look healthy and have these nebulous chronic infections and really suffer, it is hard for people to understand.

Oh, I also had a few terrible experiences with ID doctors back in the day. They are the worst.
Posted 10/1/2015 12:00 PM (GMT -5)
Wow, we all hear a lot of opinions about our illness, don't we?!!!

I think maybe I need to be more careful about which hour long conversations I have!

I'm used to feeling isolated when people say "you look fine." Or yeah, when people imply that you just need a better attitude (especially after what you're presenting is a super positive attitude).

I think this conversation threw me for a loop because he was telling me how SERIOUS my illness is, kind of like it was an intervention. And also because he was telling me that on some subconscious level I don't want to be better... And you can't really defend against that because you wouldn't be conscious of it! It's my default to take responsibility for everything, and I think it played right in.

And he said everything so AUTHORITATIVELY, like I'm not having herxes (just reactions to treatment I don't need), I should be better by now, there's no reason that lyme & babesia would make me so sick most people just recover on their own from babesia. And then he left without paying for the music lesson... Which actually makes me wonder if the whole thing wasn't some kind of power play! He has a really hard time being in the student role so maybe this was his way of asserting that he's in charge. (I guess now I'm the one using armchair psychology! ;)

Cringing hearing the other stories of invalidating comments.
Posted 10/1/2015 12:54 PM (GMT -5)
guy sounds like a jerk. there are far too many people walking around talking and walking with authority they didn't earn let alone deserve. he sure sounds like he has no idea what he's talking about which reminds me of the addage "better thought a fool then opening one's mouth and confirming it".

people who've never been stricken with a chronic illness have no perspective or understanding to offer opinions on where you should be or how you should feel. the most people deal with is going to a doctor and telling them its viral and it has to play itself out or here are some abx's. both situations usually clear up a problem in a matter of days if not a week or two. anything far longer is out of the realm of understanding for such folks. it's like talking to a 3 year old about options for refinancing your mortgage. why bother you will get nothing out of it.
Posted 10/1/2015 1:26 PM (GMT -5)
Let it go!

My girlfriend asked him how long I was going to be sick. I was stumped. I wanted to say "until I get well." but instead I changed the subject and then had to leave "for something."
Posted 10/1/2015 1:43 PM (GMT -5)
And he didn't even pay for the lesson?! wow. I should say I'm surprised. But not. It's just ridiculous.

At least he understood you were dealing with a serious disease, that is actually a pretty big surprise to me that he acknowledged that. The bad part is how he questioned you and your desire to be well. That is truly the greatest insult imaginable.

I was quite upset initially when my dr said things along those lines, given how much pain and suffering I've gone thru with this thing and how much I've "lost." All of us want to be well with all our hearts. I would give anything to be well. In the end, we have to try to forget these negative experiences and focus our energies on getting well. That is all that matters. Obviously that is easier said than done, when you are not feeling well our minds glom onto these negative experiences. At least mine does.
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