My mother's offering me a treatment I don't believe in.

[Cheryl M]

My mother has bought me an alternative remedy that isn't clinically proven to have any effect on anything whatsoever. (I am not going to say what it is so that I don't offend anyone.) She is really cheerful and enthusiastic about this. Given that it will do nothing, should I take it to make her happy?

 

[Hip]

There are quite a supplements which have been shown mildly helpful for ME/CFS in studies, and others which ME/CFS patients have anecdotally reported helpful. Are you sure this supplement is not going to be helpful?

 

[sb4]

Assuming the substance is relatively safe, try it, who knows you might be suprised.

Not sure why naming the substance would offend anyone?

 

[JES]

It depends what the treatment is, but commonly "alternative treatments" equal to something like homeopathy. Some supplements can be helpful for treating specific deficiencies and for mildly modulating the immune system, but one problem with most supplements is that they don't often achieve a high enough concentration in the body to act in the way they are advertised.

 

[Judee]

If you take it and it doesn't help, will she blame you...meaning will she say you didn't try hard enough?

The other thing is that sometimes things that are harmless or even helpful to others affect pwME/CFS badly and undoing the damage doesn't always happen right away.

Just some thoughts to weigh in your decision.

 

[hellytheelephant]

Wanting to make other people happy is good...but not if you have to disrespect your own feelings to do it.

 

[Cheryl M]

Personally I'm quite certain it will do nothing, which logically suggests I should take it to please her - I mean, it's no skin off my nose...

I didn't want to start a fight on the forum, that's all. Maybe I'm being overcautious.

 

[Judee]

I didn't want to start a fight on the forum, that's all. Maybe I'm being overcautious.

I wasn't trying to be argumentative. For me personally, I just know that my body is super sensitive so that if I react to something it is a major reaction so I was more just presenting it from that experience. Please don't feel pressured by anything I said.

 

[Rebeccare]

If there aren't any potential harmful side effects, I don't see any reason to not take it. If you're right and the treatment is just snake oil, then you will have shown your mom that you're willing to try things, and also that this treatment doesn't work for you. And if you're wrong and it happens to make you feel better, then hooray!

On the other hand, I can understand if you want to maintain a boundary with your mom when it comes to treatments. You don't want her buying you every single thing she thinks might work--it's not good for her to keep getting her hopes up, and it's not good for you to always be trying things just to please her and then worry that you're letting her down if you don't feel better. Maybe you can tell her that you're willing to hear about the treatments that she wants you to try (and you only want to hear about each one once!), but that you want to make your own decisions about what you are willing to try in concert with your doctor. That way she will feel heard, but you will be in control.

Sometimes I think that having ME/CFS is harder on my dad than it is on me. Parents want so badly to make everything better, and when it comes to this illness they can't.

 

[Cheryl M]

I think I'll take it till the bottle's run out and then hopefully she will accept that it didn't make any difference. (Of course, I am ENTIRELY open to miracles!)

Thanks to everyone for your help and advice.

 

[Gingergrrl]

@Cheryl M Your thread title caught my eye and I was curious when you said you don't believe in the treatment, do you believe in ANY way that it could harm you (cause side effects, cause allergic reaction, interact badly with other meds, etc) or is it purely that you don't believe it will help (like taking a benign sugar pill or placebo)?

During the course of my illness, my ex-husband, my late mom, many friends, even many doctors, wanted to me to try things that I did not believe would help. With the exception of a few doctors, every single one of them had good intentions to help me and just wanted to see me get better.

But even though everyone had good intentions, many of the things that I tried made me very sick or caused horrifically bad reactions. Ironically one treatment that should have been totally benign (IV saline) caused me to get pulmonary edema and be rushed to the ER. At the time, we did not understand why that happened but now we do.

So now when someone offers me a medical treatment, outside of my two main doctors, I say no. I either give a very specific reason like "thank you, but I am allergic to the dye that contains" or something very general like "thank you but I already tried that and it didn't work/made me worse, so I am sticking with my current regime that my doctor prescribed and nothing else for now".

Versus if it is a non-medicinal treatment like someone says, "You should listen to this podcast, it's really relevant to your situation" then I say yes vs. with meds, I have learned my lesson and only I choose what I take. There are many supplements out there that seem benign but in my own personal case, I know they would not be a good idea.

No idea if any of that helped!

 

[Cheesus]

I'm with @Gingergrrl here. Seemingly benign treatments can have serious negative consequences for a whole variety of reasons, including the specifics of your individual condition and the manufacturing process of the treatment (assuming it is some chemical compound that you take orally or whatever).

Your mother may be disappointed, but it is a good practice to be cautious of what you put into your body. If this doesn't work, what else is she going to expect you to try?

Medicine is dangerous, and you should have veto power over your treatment. You may decide you want to try whatever treatment it is, but if you do, it should be because you have made the decision, not someone else.

 

[Wishful]

As with experimenting with treatments you choose to try, you have to balance the risks you think are possible against the possibility that it might help. I've found that with ME, it's difficult to predict what the effect of something will be: some things that others find are helpful are seriously unhelpful for me, and vice-versa. Even things that you think would have no effect--common foods or whatever--might have a significant effect. So, unless the treatment seems risky for some reason, it's probably no different from trying a new food.

Maybe tell your mother that you appreciate the thought, but that there are a lot of health scams out there, and there are no known proven treatments for ME, clinical or alternative, so she shouldn't waste her money on them. She could ask your opinion next time before buying.

 

[YippeeKi YOW !!]

I understand your predicament, and it's hard to say no, especially to your mother. If you're pretty sure the treatment, whatever it may be, will be pretty useless but will please your mom and help her feel that she's not entirely helpless or worse, useless in all this, and that maybe she can make a difference for your ME/CFS, I would be inclined to do the kind thing.

But I'd also warn her that even fairly innocuous things, at least for other people, can have a devastating effect on your particular form of ME, setting you back badly and possibly causing extended harm, and that in future, it would be good if she'd run it by you before spending her hard-earned money on something that may be either useless, or potentially devastating. Then you can have a nice visit and talk it over, addressing the pros and cons, the possible risks and potential rewards ratio.

It's so hard for anyone, even mothers, to understand the depth and scope of this illness, and more than anyone else, they desperately want to help, to heal, to make things better for their child. If she's like my mama, she can prbably almost literally feel your pain while still having no idea about the nature or source of it. It's a hard place for her to be.

I wish I'd understood this better while I was going thru a different deadly disease, and was less than open to attempts mama made in my behalf. I'm almost crying, writing this to you.

So yes, do the kind thing. But be vigilant for side effects and reactions.

If worse comes to worse, and I dont think it will, you may have to stop taking/using it fairly abruptly if any signs of bad reactions pop up, and your mother will understand this better than a flat "No".

 

[Wishful]

One other thing to point out to people who offer treatments they've read about: make it clear that what is claimed to be 'beneficial for everyone' may not be beneficial for PWME. Our systems are out of whack, and altering our systems in a normally good direction (such as antiinflammatories, antioxidants, vitamins) can worsen our symptoms. Most health advice is written for people without ME, and what is written for PWME doesn't help, because we all respond differently.