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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

So lonely even DD and DH don't understand me.

331 replies

Thevegetarianchef · 09/09/2025 07:22

So after a lifetime of anxiety and bouts of depression I was finally diagnosed with ADHD and autistic traits.
This has been helpful with regard to work relationships.
Not so much my home life.At the weekend we met up with DD who left home nearly ten yrs ago.She lives hundreds of miles away so we see each other every few months.
We had all gone shopping not DHS favourite past time and were grabbing a coffee or going back.
They wanted coffee in a cosy cramped hot cafe.
I wasn't so sure.Off DD stomped and I know she gets handgry as this has happened before.
DH ran after her. We settled on good old Mand S which was spacious.
Am I unreasonable to expect anyone in my own family to realise I struggle and have always with cramped spaces or to find out about my diagnosis as DH said I Keep going on about it.I have linked articles for him to read to understand.
I feel so lonely and misunderstood and isolated already.

OP posts:
pinkdelight · 09/09/2025 09:34

EverybodyLTB · 09/09/2025 09:03

The fact that you can’t expect people in your life to consider your condition doesn’t mean everyone else has to have such a low bar in their relationships. I have terrible periods (endo, fibroids, adenomyosis) and so do a few of my friends. We’ll be looking at stopping off somewhere and all someone has to say is ‘I’m on my period, X has nicer toilets’ and we rethink the bar or cafe, we know how unpleasant it can be to need to sort yourself out in a hovel of a toilet. You can expect that from people who give a shit about you and your needs and comfort.

I’m quite saddened at all of the ‘stop going on about your condition’ talk on this thread. It’s literally the key to OP’s character and psyche. Why should people she loves not take her needs into consideration? It’s not selfish to expect your actual fucking husband to read an article that explains a huge amount about you. Even if say a friend's child got a diagnosis I’d read a bit about it to be supportive when we talk.

Would someone in a wheelchair be slagged off for telling their family they can’t get in a place because it has no ramps? Or someone with a severe peanut allergy not fancying going into Nuts R Us for some taste testing? Asking people in your life to make adjustments and having them think for two minutes about your needs, should be a baseline of respect and fairness.

But they're not all analogous conditions. The OP says she's had lifelong bouts of anxiety and depression, which means DH/DD have been living with that too - along with who knows whatever issues they have themselves - and that takes its toll in a way that living with someone in a wheelchair etc would not. When it gets to the level of This makes me feel more isolated due to rejection sensitivity, it's fair to say that 'considering the OP's character and psyche' could get pretty wearing for those around her even when they do love and care about her. Ramps/access issues and allergies are more practical matters that won't impact on the day-to-day mood of the family in the same way as the OP is describing. I'm not saying her family are right, I think the PP is correct who said these are three dysfunctional people who all have mood issues so clashes are inevitable, but in this case the OP got her way and is still complaining, which says a lot. Perhaps they all do understand each other, better than any of us can on here, but they're just difficult people and never going to be able to put each other first so the loneliness is something OP will have to look to solve beyond the family.

Personperson · 09/09/2025 09:35

KateMiskin · 09/09/2025 09:33

Does that mean also never going on holiday or anywhere?

Going to a cafe is very different to going on holiday. You're deliberately being obtuse.

__

Catsandcannedbeans · 09/09/2025 09:35

BuddhaAtSea · 09/09/2025 07:27

Sounds like you were all tired and hungry. Keep snacks in your bag.

So true. OP a wee cereal bar in the bag is a game changer and often saves many arguments.

Dogosaurus · 09/09/2025 09:36

People have really low bars. In my family, we wouldn’t expect someone to go to a cafe that they really disliked, and we are interested in anything that impacts each other and don’t storm off like children.

I think this thread reflects some people’s very anti ND views. If OP didn’t want to go in a hot cafe because she was menopausal and was having hot flushes, or had broken her leg, I think people would be more sympathetic. Because the reason OP seems to struggle with hot, busy places may be due to her ND, people think she should just put up with it.

Having a daughter that storms off and them both not being considerate to things that have always been an issue for you isn't how people that love you should behave. A relative of mine has bipolar. I wanted to read up on it to try to understand her more and so that I could support her, I can’t imagine not doing that or trying to find out more by talking to them if it was my partner or someone else very close to me that I loved.

smallpinecone · 09/09/2025 09:37

Greysowhat · 09/09/2025 09:31

Also late diagnosed. And I don't see any problem with expecting others to accommodate my difficulties, within reason of course. I don't think you are unreasonable to expect family to not go to a small cramped hot and presumably noisy café. Sounds hellish!

And sorry to see you've written that you rarely go out because you "spoil other peoples time". I rarely go out so that I don't spoil my own time!

Both the husband and daughter wanted to go to the cafe, it didn’t sound hellish to them - but OP’s wishes apparently trump theirs.

OP sounds like a martyr when saying she rarely goes out to avoid spoiling other people’s time, but then proceeds to do it anyway.

KateMiskin · 09/09/2025 09:37

Personperson · 09/09/2025 09:35

Going to a cafe is very different to going on holiday. You're deliberately being obtuse.

__

Am I? Perhaps her family are tired of not being able to go anywhere with her. It's hard being a caregiver, as I know from experience. One wants something back.

Greysowhat · 09/09/2025 09:38

ILoveWhales · 09/09/2025 09:32

There is an entire SEN board dedicated to helping autistic and nd children cope and navigate life. However when the nd person is a middle aged adult female?The answer is, she just can't do it.And everyone else has to bend.

If you'll note a post earlier on said that my ND male partner was just abusive, and it was nothing to do with his autism. If he was a woman, the answer would have been different.

Only on mumsnet can nd late diagnosed, women become helpless babies.

It is not true that autistic people have no agency or capacity to learn skills to manage their family lives. It does require insight and sometimes, yes, accepting that their behaviour can have negative consequences for their own kids and partners…..but there’s becoming a narrative that autistic people are never able to be accountable for their behaviour or may any sort of change or adaptation . There is a difference between those autistic people who have the level of disability that means they struggle with every aspect of life and those autistic people who still are able to go on to have families, jobs and need support as to how they live the best they can despite their diagnosis.

Edited

That's pretty ableist

Vroomfondleswaistcoat · 09/09/2025 09:38

Just coming back to add - beware of making 'I have ADHD' your entire personality going forward.

I've seen it a lot in late diagnosed adults recently. It's as though they lean on their diagnosis to make sense of things that EVERYONE struggles with and it becomes their only conversation piece. 'I can't pay that amount for a train ticket - I HAVE ADHD YOU KNOW!' I worked with someone who did this and she would turn every conversation back to her diagnosis, whether it was relevant or not and people's eyes would glaze over. She'd have got more sympathy if she'd just asked for reasonable adjustments and then shut up about it.

Tiswa · 09/09/2025 09:39

I think families should adapt yes, I think the problem here is that adapting means discounting everything other than the usual M&S cafe, no small family run one.

and the OP managed shops she managed to walk around it became a problem when she didn’t like the cafe

Idontknownowwhat · 09/09/2025 09:40

Hmm. I think I would sit down with them for a discussion. I'd say to them, so I have recognised a lot of the behaviours I've had forever are actually traits of ADHD and Autism. This is really helpful, and I'm hoping that I can use my diagnosis as a bit of a roadmap in picking apart why I am, like I am.
I understand now that this has been difficult for both of you as well as me, but I am hoping that with understanding of myself- and some support from you both that I can start to work on de escalating these behaviours. Some will continue but I hope that many will disappear entirely as long as I work on the anxiety, and do my best to understand what leads to my overwhelm and try to avoid it, as the people who share my life with me, I'd really like you to both be on this journey with me.

Are you on medication for the ADHD?

whitewineandsun · 09/09/2025 09:42

Magsbd · 09/09/2025 08:00

Sounds like DD has a problem managing her temper.

Maybe she's fed up with always compromising. Ditto the husband.

OP got what she wanted, and she's still online moaning about them and how they 'don't understand'.

Greysowhat · 09/09/2025 09:42

smallpinecone · 09/09/2025 09:37

Both the husband and daughter wanted to go to the cafe, it didn’t sound hellish to them - but OP’s wishes apparently trump theirs.

OP sounds like a martyr when saying she rarely goes out to avoid spoiling other people’s time, but then proceeds to do it anyway.

She's autistic. And yes, sometimes the wishes of the autistic do trump those of the allistics.

ILoveWhales · 09/09/2025 09:42

Whoever told the normies to try a day in your brain to see how hard you have it can go straight to hell.

Try a day in my brain. I'm struggling with grief over losing my mother. I'm struggling with work stress, relationship stress, health issues. You think I don't feel overwhelm.

To add it all, I had an autistic partner who wouldn't go in a taxi to save me going on public transport to help my claustrophobia.

This is why people are sick and tired of people with most of the time level one or self diagnosed nd. You think it's all so easy for us, don't you? And this is where the resentment comes in. N t people are not allowed to have issues.We all have to give way to you.And it's disgraceful.

Thevegetarianchef · 09/09/2025 09:44

We travelled 250 miles paid for accommodation and DD joined us.
They are both meat eaters I'm happy with a small snack so they had the food they wanted.
They like sport so I moved elsewhere so as not too spoil it.
I do compromise maybe not as much as I should.
I think it's reasonable to expect DH to read some short articles and educate himself when I read up about his serious health condition in the past.
FWIW I will make an effort not to mention diagnosis to anyone.
Very helpful responses thanks.

OP posts:
Londog · 09/09/2025 09:44

Feel for your anxiety state OP ❤️
But..
This post has really pulled me up short to realise that I can be a selfish , ‘want my own way’ person and yes I do blame my late diagnosis of Adhd a lot and my family are sick to death of me banging on about it and relating every unsavoury behaviour to it , which ensues in so much tension at home . At times I do feel in despair to be understood but I need to step outside myself a bit and realise that often my behaviour is ‘my way or the highway’.
Today I vow to more self aware, more relaxed and fair and less of a micro managing menace to my family 😳 xx

sunshine244 · 09/09/2025 09:44

Sadgirl101 · 09/09/2025 09:24

Ok... I say all of this very gently and to try and help you, as a late diagnosed ADHD female, with likely Autistic traits myself. It's going to be long, sorry.

For the sake of your relationships, you need to try and reflect and be honest with yourself, even if not us, about this statement. I know others are saying your diagnosis makes no difference, but I think it massively affects your perception and processing of situations/events, I know mine does, and I constantly find myself making myself pause to consider their POV.

Based on what you have said so far, it is incredibly unlikely that both DH and DD are having spontaneous temper tantrums for no reason, you're just not recognising the steps that got there.

For starters the "compromises all weekend"

  • Did they know you were compromising?
Compromise requires communication - were they aware your preference was something else? Had you communicated your suggestion, but agreed to go along with theirs on this occasion? If so, did you do so willingly and enjoy the situation, or were you visibly anxious, uncomfortable, closed off and ruining the experience for everyone because they could see how unhappy you were? This won't have felt like compromise to them if the vibe made it so abundantly about the fact you didn't want to be there. Did you say nothing, mask and suck it up, and so they were genuinely unaware that you had made any compromises for them? If so, they can't have known that you made compromises or allowances and that you were expecting this reciprocated, because they didn't know you weren't happy with the choices made. Or did you not actually have a preference and were happy to go along with theirs? Because that isn't something you can now retrospectively frame as a compromise.

Often in these situations I find the conflict/blow up comes because I haven't expressed calmly and in a non emotive way my preferences or POV until the point at which I'm disregulated by the situation, by which point it's impossible to communicate them regularly.

At what point did you communicate that your preference was for a quiet location?
The ideal time for this was when coffee was decided. "Yeah that's a great idea DD, let's grab a drink before we head back. Shopping has really taken it out of me, any chance we can head somewhere that's not too packed so I can catch my breath?"
If someone said the above, before you've headed anywhere, it's far easier to have a quick think about where's likely to fit that criteria and go there, and they likely never would have picked somewhere unsuitable. If someone said nothing, let us walk when already tired and hungry to one spot, and then was told that didn't suit and someone wanted to go somewhere else, probably in a different direction, I'd be annoyed that they just hadn't said that from the outset.

You cannot, and should not, avoid all discomfort. Masking is not inherently bad/ It's important to learn how to juggle your social battery
I think it's really easy with a late diagnosis (meaning as an adult, because I guess as a child you have limited say in what or how much changes) to have an epiphany of "all these things I thought everyone felt/did/struggled with, they don't, and not everyone has to mask to achieve these things, therefore I will be like them and stop masking.
Masking I'm noticing seems to be talked about more and more, particularly in ND circles as a negative thing and sometimes to be avoided at all costs, which feels a bit dangerous and unhelpful. It's a life skill. NT people mask all the time, at work, socialising with a partner's friends who they don't particularly like, at kids events/PTA stuff. It's a persona, a version of you adapted for the environment. The issue with masking in NDs is that you can find yourself needing to do it constantly, which leads to all sorts of issues as it's not sustainable. But that doesn't mean you can't/never should. If you have been able to eat/drink in cramped coffee shops before, you can do it again. It might be more of a drain on your social battery, but you could do it. Late diagnosed people saying they 'cant' do something actually mean "I am no longer interested in masking my feelings in this scenario" which is valid, only they can choose what they will and won't mask for but you can't then be surprised that others are frustrated by that lack of compromise, when they themselves often mask for short periods for the benefit of those around them.
For example, I won't mask on a date, because it's important to me that any potential partner was comfortable with the slightly chaotic version of me, I would never want to have to mask permanently around someone I was in a relationship with, nor do I particularly mask around my ND friends because we're cut from the same cloth and it's a bit different, but I absolutely would mask some elements in social situations where social norms required me to talk less, interact with people I wouldn't normally, etc. I'm not a fan of crowded, busy places, but I could grin and bear it for a half hour if that decision suited the majority. But that resilience and masking is a skill that needs practice. Allowing yourself to avoid anything that makes you feel uncomfortable does not help in the long run.

Which brings me onto the second part of this last subheading about managing your social battery. Perhaps look at the spoon theory if you haven't already, it was designed with chronic illness in mind but has similar applications to mental/emotional load/resilience for ND brains. In essence, it's about viewing spoons as capacity and knowing how many spoons you have on a given day (which varies according to multiple factors) and how many spoons certain activities/environments "cost". The idea is not to spend more spoons than you have, but for me (I'm sure it's not as straightforward forward in cases of chronic illness) I'm open to borrowing from future days, you just factor this in. And that doesn't mean spending the spoons on the bits that work for you and then simply telling others their choices can't happen as you're sold out, there's an obligation to you to pace yourself. If that means you know that you've got a busy evening, you have a slightly quieter day, or that you cut shopping short by a busy shop or 2 to leave spoons for coffee without feeling on the edge, then that's something to do.
From DHs perspective. If I had dragged around the shops, with no real interest in it, and I thought the trade off was that I was going to get a "nice" coffee in an independent coffee shop with a cake or a treat, and then because the person who wanted to go shopping had shopped herself out, we ended up in a soulless M&S cafe with shipped in and defrosted cake, I'd be really disappointed.

Its not clear whether you saw DD all weekend, or just for shopping (you say in first post you met upnwith her, but then say all TV and food choices were "theirs") which implies DD may have been about all weekend, and it's also not clear whether you travelled to her or vice versa, but it probably could have been predicted that this weekend/day might have been overstimulating/overwhelming for you and so I would have been planning my day(s) either side to be as low stimulation as needed to allow me to rally and mask as needed to make the most of my time with a DD you rarely see. Alternatively, choosing not to do anything that doesn't feel you with joy and/or makes you uncomfortable is a choice, and that's valid, but it's important you are aware that is a conscious choice, and then not to be surprised or put out if those around you are either exasperated/annoyed, or choose to start doing things without you .

It requires give and take, and if they can see genuine effort on your part, they're far more likely to try and meet you in the middle, but your posts read a bit like your idea of compromise is factored entirely around your diagnosis and how you want things to go, with little consideration for what they would like to do.

I would suggest some therapy with someone well versed in ND clients. It's important you use the diagnosis as a blueprint to yourself to enable an understanding of yourself and use this to find strategies and tools to help you thrive, and to reframe conversations and situations where we feel misunderstood and consider alternative POVS, not as a reason to expect those around you to prioritise your wishes above all others at all times. It takes a huge amount of work and self awareness, but it'll be worth it!

This is a really helpful comment.

I would add, though, that by the time adults with ADHD get diagnosed they are often at burnout point anyway. It takes so long to get an assessment and/or need to get to such a high level of issues to decide to go private.

In my case having to deal with ND kids, constant school appointments,.school refusal with one child, a tricky post seperation scenario plus probably perimenopause looming... the number of 'spoons' I have available has plummeted. I'm coming to terms with this, but its not easy trying to balance all this invisible stuff.

GertrudePerkinsPaperyThing · 09/09/2025 09:46

I am really interested in the answers you’re getting as I hate cramped spaces too. Also on a waiting list for ADHD assessment (although I suspect I ought to have asked for ASD assessment too).

I guess pps are right that you can’t expect to always get your preference and that other people’s preferences count too.

I have certainly noticed people get annoyed with certain things about me - like the need for an aisle seat on public transport, aeroplanes or the cinema / theatre. I also can’t sit in the backs of cards or travel backwards on trains but that’s motion sickness rather than ND (but the below also applies to it).

Like you, I think, I would find it comforting to be able to put a marker down that everyone would remember that says “I can never do x thing, please don’t even ask me to”. It’s hard having to restate your needs every time and worse to be asked to compromise on certain things.

But I’m interested in the answers here and will give thought to how much I ask people to accommodate.

My Dad is terrible for the “I can never do this / we are never doing this” re his ASD traits and also his fear of heights.

Sadgirl101 · 09/09/2025 09:47

EverybodyLTB · 09/09/2025 09:03

The fact that you can’t expect people in your life to consider your condition doesn’t mean everyone else has to have such a low bar in their relationships. I have terrible periods (endo, fibroids, adenomyosis) and so do a few of my friends. We’ll be looking at stopping off somewhere and all someone has to say is ‘I’m on my period, X has nicer toilets’ and we rethink the bar or cafe, we know how unpleasant it can be to need to sort yourself out in a hovel of a toilet. You can expect that from people who give a shit about you and your needs and comfort.

I’m quite saddened at all of the ‘stop going on about your condition’ talk on this thread. It’s literally the key to OP’s character and psyche. Why should people she loves not take her needs into consideration? It’s not selfish to expect your actual fucking husband to read an article that explains a huge amount about you. Even if say a friend's child got a diagnosis I’d read a bit about it to be supportive when we talk.

Would someone in a wheelchair be slagged off for telling their family they can’t get in a place because it has no ramps? Or someone with a severe peanut allergy not fancying going into Nuts R Us for some taste testing? Asking people in your life to make adjustments and having them think for two minutes about your needs, should be a baseline of respect and fairness.

But all of those examples are fairly isolated. In your endo example, presumably not every meeting/gathering is happening while someone is on their period, and suggesting an alternative because the toilets are nicer, but is probably a similar place/location (or perhaps even nicer if it has better toilets) the impact to the group is minimal. It's a reasonable adjustment.

The wheelchair example, the overwhelming majority of restaurants/coffee shops/tourist attractions have disabled access these days thanks to disability laws, so having to rule out a few minorities because of this, still leaves plenty of flex for a decision to be made within the group that suits all, it's a reasonable adjustment.

Again, there are plenty of activities the nut sufferer could do other than nut tasting, and a group decision could be made, and the others could go nut tasting another day. It's a reasonable adjustment.

But the thing that makes all of those things reasonable, apart from their minimal frequency and impact, is that they are communicated in advance. If you suggested your and your friend went nut tasting, they agreed, and then when you got to the door said "oh I can't eat nuts, we can't go inside" it would be frustrating. Or you invited your friend to walk the steps of the empire state building, and you got there and told you they couldn't do stairs. It would be frustrating, it could have been discussed ahead of time.

Thevegetarianchef · 09/09/2025 09:48

Ilovewhales sorry to hear you are struggling.
Autism doesn't trump claustrophobia or panic attacks which are disabling conditions in their own right.

OP posts:
User37482 · 09/09/2025 09:50

Honestly as a family we are constantly trying to compromise. It’s annoying and we may bicker a bit but no-one has stomped off yet (except for the five yr old) over a choice of cafe. I’m guessing they are finding you a bit much atm. I understand that you may be discovering stuff which really helps you with self insight but do they feel like you are “leveraging” your diagnosis to demand compliance? They sound fed up or they could be very unreasonable it’s hard to tell. It wouldn’t bother me to choose on the basis that one of my family was more comfortable in x place, I really wouldn’t mind at all. However if I felt pressure to always conform to their preferences I would get annoyed.

When I was in therapy Dh and I would meet afterwards and go for dinner and I could discuss the therapy or not as I chose. But it meant that on the whole the time spent discussing me was limited. If it starts bleeding into everyday life it can become burdensome to even people who love you.

From their perspective nothing has changed you are the same person from yours you can now articulate why certain things make you uncomfortable. i would also say that of you haven’t done stuff because of your additional needs then your family may feel that you put limitations on them and it can get frustrating. It doesn’t mean that they don’t love you but it may mean that you may have to meet them half way.

Boutonnière · 09/09/2025 09:51

Thevegetarianchef · 09/09/2025 07:46

I do wonder if DD has similar traits.
When we lived as a family we would compromise they would get burgers and shakes while I shopped.
Tbh my struggles with small spaces has prevented me getting on public transport,eating out or previously even getting to see DD.
Theatre cinema etc has been a big no no.
You are right though the world does not revolve around me.
I just hoped they wouldn't storm off ahead like I was being weird.
This makes me feel more isolated due to rejection sensitivity.
I have had CBT for years before my diagnosis.

This was my mother decades ago, only then the fashionable diagnosis was agoraphobia, which came and went over the years. It dominated my childhood and adolescence, everything having to accommodate her preferences and restrictions. It came close to derailing my lovely, patient father’s career and did put a stop to his political ambitions. It was only later that I realised just how domineering and manipulative she was and uncompromising to others and never, ever, grateful when everyone else put their prerences aside.

Thevegetarianchef · 09/09/2025 09:51

Gertrudeperkinspaperything
I agree.Work events nice to be included.
However I won't be there and haven't done any in 40 yrs.

OP posts:
EmeraldShamrock000 · 09/09/2025 09:51

It is difficult for the whole family, although they should have patience with you, understanding has to work both ways.
You become your illness by constantly thinking & talking about it, sending links, your obsessing about it.
Join a support group outside of the family.

smallpinecone · 09/09/2025 09:52

Dogosaurus · 09/09/2025 09:36

People have really low bars. In my family, we wouldn’t expect someone to go to a cafe that they really disliked, and we are interested in anything that impacts each other and don’t storm off like children.

I think this thread reflects some people’s very anti ND views. If OP didn’t want to go in a hot cafe because she was menopausal and was having hot flushes, or had broken her leg, I think people would be more sympathetic. Because the reason OP seems to struggle with hot, busy places may be due to her ND, people think she should just put up with it.

Having a daughter that storms off and them both not being considerate to things that have always been an issue for you isn't how people that love you should behave. A relative of mine has bipolar. I wanted to read up on it to try to understand her more and so that I could support her, I can’t imagine not doing that or trying to find out more by talking to them if it was my partner or someone else very close to me that I loved.

I don’t think the thread reflects people’s anti-ND views; some ND people actually don’t use their diagnosis as a shield to deflect criticism of selfish behaviour, and don’t expect or want others to have to alter their behaviours or preferences to suit the ND person.

It’s actually quite insulting to think that ND people have no control or insight into their behaviour and can do nothing about it, that they can’t compromise, and can’t be expected to do anything they might find difficult. Being ND doesn’t make you the centre of the universe, and other people’s desires are just as important. It doesn’t mean family members don’t love and support them if they don’t/cant tailor their preferences and behaviours to suit the ND person.

Some ND people use a diagnosis as a tool to better understand themselves, and help them navigate these situations, not as an excuse for knowingly making other people unhappy. They don’t send links to their DH to read in order that he might change his behaviour to suit. It’s unreasonable and selfish and doesn’t do the ND person any favours anyway, just makes life more difficult for them. There’s a limit to how much you can ask of others.

theressomanytinafeysicouldbe · 09/09/2025 09:53

Waiting for diagnosis after struggling with life for nearly 50 years and my DH keeps taking the mick out of me but he doesn't understand the internal struggles I have lived with and masked for so long. I just need the diagnosis so I can breath and be like wow, thats what it was all along, im not anxious, depressed, incapable, emotionally fragile, etc. Then I can deal with it.

I have some air pod 2 pro - amazing for noise cancellation. I plan were we will go for food or coffee before we go out and make it more a suggestion before we go, try and come up with a compromise. I have managed well over the years but more recent years I have thought to myself why should I have an internal battle all the time which is why I went for assessment.