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The refusal letter was a template and I answered it like one

Started 5 May 2025 · 20 replies · 202 hearts · read 3.2k times

BrimHalifax, UK · 5 May 2025
about a year ago

The refusal letter was a template and I answered it like one Writing it down partly to work out what I actually think.

This is the boring administrative kind of problem, which I gather is the kind that actually gets solved.

Here is where I am. The medication side has been more or less as described, and the part nobody prepared me for is everything around it: what to say to people, how to plan a week, and how to tell the difference between a thing to endure and a thing to raise.

My prescriber has been fine, genuinely. The problem is that I get nine minutes twice a year and there is no version of nine minutes that covers this.

Not looking for a plan. Just company and whatever anyone has found.

67

RayBarnsley, UK
#1

Two things that helped me, neither of them clever: small amounts more often, and drinking a lot more than felt necessary.

9

TiernanOmagh, NI
#2

Building on what the opening post wrote rather than answering the original question.

I would take that to a clinician rather than to us, and I would do it this week. Not because it is definitely serious — because it is the sort of thing that is much easier to rule out than to worry about.

10me too 5

TasnimBradford, UK
#3

the reply above said something I want to sit with for a second.

Different experience here, for balance. Mine did not improve and in the end I stopped, and that was the right call for me. Both outcomes exist.

11

PetraFacilitatorMelbourne, Australia
#4

Noticing out loud that this conversation has drifted into comparison. That happens without anyone intending it and it does not help anyone. Let us come back to the person who asked.

14

NkechiAbuja, NG
#5

the reply above said something I want to sit with for a second.

No advice, just recognition. That sounds exhausting and I am sorry you are in it.

14

IdaRotterdam, NL
#6

I keep a two-line diary and it is the only reason I could answer this question about myself. Worth starting even now.

11

GroverPortland, ME
#7

Can I gently push back on one thing? Not the substance, just the framing — you have written twice that you should be coping better. Who told you that?

5

WinkleWeymouth, UK
#8

My pharmacist was more use than anyone. Ten minutes at the counter, no appointment, no charge.

7

ZebAustin, TX
#9

the reply above said something I want to sit with for a second.

I am about four months behind you and I have been dreading exactly this, so thank you for writing it down before I got there.

7

FitzLimerick, IE
#10

Yes to the burping. It is real, it is unbeautiful, and it does settle.

9

ColNewquay, UK
#11

Building on what the reply above wrote rather than answering the original question.

The phrase that unlocked my appointment was asking what specifically she wanted me to watch for. It moved us from reassurance to a plan in about thirty seconds.

12me too 8

BodilÅlesund, NO
#12

It got worse before it got better for me, which I wish someone had said. About ten days of worse.

5

TheaBergen, NO
#13

For what it is worth, the trial data on this is thinner than the confidence of the internet would suggest. Worth knowing when you read the posts.

9

TarnKeswick, UK
#14

Gently disagreeing with the reply above, or rather adding the other half of it.

Have you got anyone who can be with you when you do it? It made an enormous difference to me and I felt silly asking.

7

MarthaCork, IE
#15

The thing that changed it for me was going slower, agreed with my prescriber. I am not suggesting you do that. I am saying the conversation exists.

11

BrimHalifax, UK
#16

the reply above said something I want to sit with for a second.

I did exactly the same and felt terrible about it. You have not done anything wrong.

10

RayBarnsley, UK
#17

Practical, boring answer: write the three questions down before you go in. I have never once remembered them otherwise.

10

TiernanOmagh, NI
#18

Coming back to this a fortnight later to say it settled. Leaving the update because I hate reading threads that stop.

7

PetraFacilitatorMelbourne, Australia
#19

Two things, both boring. First, none of us can tell you what to take. Second, the conversation you want to have is with your prescriber, and we can help you write it down.

24

MoBradford, UK
#20

I am the person who had the frightening version of this. I went in, it was investigated, and it was not what anyone feared. Going in is the whole of my advice.

10