stand firm

We've enough things come charging at us full tilt that we don't need to feel like our caregivers through their actions, are doing the same.


These two cases aren't necessarily related except they appeared on my news horizon close-ish together.

This is a slightly edited reply I gave to a young woman from East Anglia who, in the last few months decided to take herself off disease modifying therapies (she was diagnosed less than a year ago.

"Is there a legal issue here? you're over 18, right? you're a grown up and they can't force you to take something if you don't want to. 
It's worth not pissing people off so show you're trying to behave like a responsible adult and would like to look at all the available trial data. Ask if they could please show you or point you in the right direction to see some compelling proof for taking these drugs. 
Ask if the doctors wouldn't mind treating your prescribing situation like a court of law - please could they provide as close to incontrovertible proof of the benefits of breaking your skin?

Behave like a grown up and keep reasonable. 
Don't get heated and start accusing them of trying to hurt you cos they're not.

(MSfriends, with the best of intentions, can sometimes get a bit heated and lots of folk take it very personally, don't fall into that trap!)

Seems like you've been doing pretty well so far without any help from any of us!

The doctors are just doing their jobs (we don't need to go into conspiracy theories or question the kickbacks they may/may not receive from pharmacos; it just muddies the waters and gets people's backs up).

Remind them that they get to close the door on MS at the end of the working day but you have it 24/7 so you really don't want to make a hasty treatment decision, they can understand that, can't they?

Appeal to their logical, scientific, rational brains and reassure them they know an awful lot more than you but you're at the beginning of adulthood and want to do things properly (flattery may not get you everywhere but it helps avoid the closing of some doors).

Have a good rest of August and give us a shout when you're round this way.

Do you have someone to go in with you, are your folks able to get time off work/would you like someone as moral support?

I didn't myself but there were no DMTs available before my mid 20s. Not sure how rational I would have been a few years earlier.

I haven't asked, what sort of symptoms do you have?
x

The less than 20yr old woman replied that she was at present Asymptomatic.

I can't help but wonder if the person I replied to with this message is a ringer of some sort?
I could be utterly wrong and have just developed a judgmental, undiscerning hypercritical mind over the years!
in which case I wholeheartedly apologise.

meanwhile in non MS circles:

it took someone with cancer (twice) to point out that oncologists (and consultants generally, I chose to infer from the radio interview this morning) don't seem to look at the body holistically! In treating his prostate cancer and subsequent throat cancer he's been left from the agressive radiotherapy with a collander where his body should be.

Consultants/experts get to close the door on the patient at the end of their working day but the patient deals with the condition and gets no let up.

addition one day after posting:
after just catching up with a couple of wheelchair Kamikaze's posts I need to remember how good it felt being non-judgmental (after a short mindfulness/meditation course) and just rein it in a bit.