Upset by mammogram

[RonMaelDancing]

This is playing on my mind and I wondered if I could talk it through with others who might understand.

I'm autistic; I went for my first mammogram today and found it a difficult experience. I was anxious in the run up to it and by the time I got there I was experiencing mild derealisation. That can happen sometimes when I am really stressed and I guess it's a coping mechanism, but it has added to the sense of unease and overwhelm in trying to process it.

I am trying to pick apart why I found it so stressful.
I had to travel in a taxi. It was in an unfamiliar place and I couldn't find my way to the right room. The hospital seemed a complete maze and the whole place felt odd and post-apocalyptic. (I think this was partly down to the derealisation). There were abandoned beds and medical equipment in some corridors, plus obviously everyone in masks, lots of signs about covid, vaccines and testing. I know this is part of life nowadays but at the time it felt threatening and as if it was in a film.

I followed some signs that said breast unit but this turned out to be the wrong place and I had to walk across several car parks and road junctions with no pavements or crossings to find the right place.
It was in a sort of large portacabin up some stairs and for some reason that upset me. I think it looked precarious or something and it added to the feeling of unsafeness.

When I went in I had to sit on a seat covered with plastic and there was music playing. I wouldn't normally be bothered by this so much but it all felt so uncomfortable and overwhelming. I started to cry quietly and I think the nurse saw but she didn't say anything. To be fair she may not have seen as I was wearing a mask and glasses, or she may have noticed and decided it was better to just push on and get it done.

I found the procedure confusing and upsetting. I felt helpless and also humiliated at having to be semi-naked. She asked me multiple times to state my name, address, date of birth and didn't explain why she needed to ask repeatedly at different points through the examination. I had to take my glasses off and I can't see well without them at all. I found the machine intimidating and I didn't know where to stand, she had to direct me a lot and also move me about and touch me. Obviously this was necessary but I found it unpleasant. A few times she told me how to move and it was confusing, I couldn't process what she meant, eg "stand here, lean like this, now look over your left shoulder". I couldn't think which was my left so I just froze and I felt like an idiot.

Afterwards she asked again for my name, address and date of birth and I was so disorientated it was hard to remember. I thought she must think I was very slow or stupid.

I keep thinking about the sensation of her touching me and telling me to move about, and feeling tearful again. I am not suggesting she did anything inappropriate at all, I understand it was necessary and I am grateful to have the scan done. I just felt so vulnerable and confused and those are real triggers for me and I think take me back to childhood memories of not knowing what was going on or how to behave.

I still feel blank and strange (derealisation) but I think underneath the detachment my brain is trying hard to process what happened and it is painful and upsetting.

I had thought before I went to the appointment that I might explain I was autistic and feeling distressed, but I don't honestly know what they could or would have done differently. However I feel frustrated I didn't advocate for myself or manage to do anything to make the experience less stressful.

I don't know what I am hoping for from this thread. I guess just to see if anyone has any insight or suggestions for dealing with the feelings now. Or just to hear that others understand and might feel the same. I am feeling very 'other', freakish and useless for finding a basic medical procedure so difficult to handle.

Thank you if you have read this and thanks if you have any words of comfort. It's put me in quite a dark place if I am honest.

So sorry to hear you're feeling this way. I've not come across the term derealisation before but I feel like I'm not in my own body when in such a stressful situation, if that's similar? I wouldn't worry about crying at the appointment, so many women find mammograms painful and stressful that it's probably more common than you think.

Would writing a letter to the hospital or PALS about your experience help? Staff are told to check things over and over as part of the process, to ensure everyone gets the right results, but they probably don't realise how dehumanising it is.

I'm not autistic but much of what you experienced is familiar to me so with the added aspect of autism you must be shaken. I don't know what you do to give yourself comfort but whatever it is, do it. That plus time will make you feel easier. Last week I had to visit a very sick relative in hospital. Hospitals are so labyrinth like, it is easy to get lost. I asked my way a couple of times, but people tell you go here. Turn there etc. It took me half an hour and at the end someone showed me the way. I was holding back my tears by then. Mammograms sometimes hurt and having someone stretch your breast and pull it and clamp onto it for the x-ray ..that would have pushed me over the edge had I been going for one last week. Luckily my mammograms have been in small units, portacabins, so no problem finding my way. Come out of your dark place Ronmae..tis nearly spring. Tomorrow I will buy some bud daffodils to watch them open up. Sleep well

Thank you for the replies. Oddly I did not find the scan too painful. I was stressed about that before I went but it was more uncomfortable than pain. I have small breasts so maybe that is why.

Jjjay thank you for the kind reply. I am sorry you had that upsetting experience. I hope your relative is doing as well as possible. I have bulbs sprouting and will try to remember things pass and my feelings on this will change and fade away.

EatSleep thank you for replying. Yes, I would describe derealisation as the feeling of not being in your own body, or of the world not being real but more like a film, or watching yourself from outside. It's hard to actually explain isn't it?

I think crying and having it ignored was a hard thing for me, it is something I've experienced quite often with family or significant others and it makes me feel dehumanised and as though my feelings don't matter. I do understand if the nurse just thought 'let's get this over with so she can stop worrying' but it still brings back those feelings of having my inconvenient emotions ignored.

I don't think I would write to PALS as what would I say? A neurodivergent person found life difficult? Sorry if the humour is misplaced but I am trying to laugh at my own ridiculousness I guess.

@RonMaelDancing I now have to go for mammograms every three years. I do not like being touched. I have to prepare myself in the weeks before to be, um, woman-handled and moved about for the machine - it is dehumanising.

I agree that maybe in a week or so when you feel a bit more settled, you should contact PALS in writing or by e-mail (Take a photo if you write a letter) Tell them that you are ND and then, basically tell them what you have told us and how it has left you feeling.

It may be difficult mentally to go over it again, but I hope it will make them realise that some people need more thoughtful and understanding care than others and that they need to maybe provide a training module or a better training module for staff in caring for ND people.

Meanwhile, thinking of your garden bulbs is a lovely way to help with stress. I nearly missed the tiny irises I have hidden under a hebe (I didn't think it would grow so quickly!), and I think either some hyacinths or early daffs will be next, how about you?

I feel for you, opening poster. I'm neorotypical (is that the right word?, Anyway) I don't ever feel comfortable having mammograms. You are put in such an un natural positions, then (the cherry on the cake) told to drop your shoulders and relax.

Relax? I'm half naked, I'm stood, in the most un natural position imaginable, holding onto handles, and my boob is being squashed between two plates. It's so odd, it is almost like a Monty Python sketch.

If it didn't hurt so much (that's just me, I've had breast surgery and the scar tissue has stuck to my chest wall, so they have to stretch it out, and clamp, quickly) I'd laugh.

It's a good job it only lasts less than a minute. I try to grit my teeth and try to get it over with.

I'm 71 now, so I'll be spared this for the forseeable, if everything else goes ok.

My advice on the future is to do a quick visit prior to health appointments, so at least you know where you are going. That takes away the one bit of the process that upsets you, and you can control. I'm not sure there's anything else in the process you can control.

Anyway, well done you for getting through it in one piece, more or less

Poor you. I'm NT and I also feel a right idiot trying to follow those instructions when I go for mammogram. Also I agree they are always in some kind of temporary structure. I think it's because they sometimes move to different places.
Anyway well done for you getting through it. Give yourself a massive pat on the back.

@RonMaelDancing you've explained it better than me... my usual description is that I feel like a giant meat robot and that someone else is driving it makes me anxious because I can't tell if I'm going to flap my arms and legs and hurt someone if they're touching me while I'm under stress.

Well, not bloody surprised you had a meltdown thingy just getting there. Sounds horrendous.

Thank you everyone, I really appreciate being able to speak about it and being listened to without being mocked or minimised.

EatSleep the meat robot is a chilling description! I did once speak to a doctor about it and they just said it was down to stress and that I should take valium if it happens. I don't really think that would help tbh, I think it would make me feel more weird and more disassociated.

I personally don't worry I'm going to flap, I feel more frozen and passive when it happens, and sometimes I can't move properly, as though I am 'stuck'. It sounds stressful for you and I wonder if others might have experienced similar. Mumsnet can be reassuring in finding shared experiences so I wonder if you posted about it yourself whether you might get some insight?

becca and user1471 thank you for giving your NT experiences of mammograms, it does help to hear many people find them difficult, although I am sorry for your experiences.

Thanks also for the suggestion I did well to get through it - I hadn't thought of it that way but my brain is fighting it to some extent and my self-critical voice is saying "you didn't get through it in one piece, you were a complete mess and didn't cope." However, I did still go to the appointment and have the scan , that is a fact and I will try to focus on that.

user1471 I was sad to hear how much it hurt you. I have heard from other women it can be really painful.

I appreciate the suggestion about visiting the place first... unfortunately I had to get a taxi there and back and it was not cheap, so I am not sure that would have been the best option this time, but in future if it's possible I agree that could help.

LilyRed I am really reluctant to write to the hospital. I have difficulty complaining about things because I think the person I have complained about will be angry. Possibly the next time I visit it will be the same woman doing the tests. I have to go yearly so she might well be there. I'm really not sure what they could have done differently, as I didn't tell them I had autism or ask for any kind of support... I appreciate the suggestion, though, and I'll give it some thought though.

How do you prepare yourself to be touched? I wondered if next time I could ask not to be touched but I don't think it's possible to carry out the procedure any other way. I also thought if I explain I find it hard, they might be more gentle or slow which could help, but then again it might just prolong the whole experience, and they are probably on a tight schedule and need to get the job done and move on to the next person. It certainly felt that way and I can only imagine how busy they must be. I wouldn't want to get in the way of them doing their work which is very important.

Thank you for telling me about your bulbs. This is my first year growing them in my garden and I put a real mix in so while lots of things are coming up, I don't know what any of them are. It's quite exciting!

Thanks again to everyone for replying. Today I feel a bit headachy and hungover (not from alcohol but the similar tired, heavy, jaded feeling). I would like to stay in bed being looked after but of course life goes on and that can't happen! I know this will pass but it feels hard to struggle and to have to ignore my own needs for rest and nurturing, in order to be able to carry on functioning and fulfilling my responsibilities.

BlackeyedSusan it wasn't great! Some of the things I've described here sound a bit silly when I wrote them down, like not liking the plastic chair, but I think it helped me understand the overload I was experiencing before I'd even gone into the room where the scan took place. On a good day I could easily cope with things like taking a taxi, background music on etc, but because I was stressed about the appointment it all felt that much harder.

I've just realised I didn't mention something that's probably quite relevant. My sister had abnormal results at her last mammogram and discovered she had breast cancer. She's luckily doing fine with treatment but I expect it gave the experience more weight for me. It's very hard to pick out which parts are stress about cancer, which parts are 'normal' stress about a medical thing, which parts are autism, etc. I suppose it doesn't matter but my brain is trying to process all of it and work out whether my response was 'acceptable' or not. Such a pointless thing to do but something I can't seem to help.

I'm so sorry you had this experience. I can't face going for them so I don't bother. I think if someone touched my boobs I'd punch them and run away

I'm NT and also had a mammogram yesterday. I felt quite overwhelmed yesterday too. Being manipulated and squeezed whilst semi naked was stressful and made me anxious (my MH is a bit rocky right now). Plus I'm the age my DM was when she had breast cancer (full recovery).
You got through it. You did good.

Poor you OP - but you got through it.

I do think you could contact the hospital You would not necessarily 'complain', but you could make suggestions as to how the experience could be made easier for many women in future.

That way you can let the hospital know how you feel and encourage them to make improvements, wtihout 'having a go' as such. You could phrase it as "I am not neurotypical and thought these insights might be useful to you" - though to be honest I think many women would be helped, because many women would stressed out by that experience, especially not being able to find the right place to go.

(as previous posters, I really disliked mammograms to begin with but now I've had so many and always in the same clinic, I have got used to them)

A particular bugbear is beign asked your name etc over and again. At a guess, this is to ensure they keep the right records with the right person, as a mix up could be very serious. But they should say so!

SO from your experience for example I would suggest to them that in future:
The invitation gives clear directions wtih a map, parking/bus stops/etc clearly marked, hosptial main entrance, and mammogram unit, all the important landmarks
The invitation includes a clear explanation (with diagrams/simple outline drawings) of what will happen (or what usually happens, if not every time is the same).
Pictures on the wall (for example a tree one side an a house the other) for right and left - so many people have difficulties with this one, stressed or not)
Guidance to staff to say "sorry I know you've answered this, just want to check your name and date of birth " or whatever it is they ask.

I think that when they don't mention that they know this is this is a repeat question, it makes them seem incompetent (even though they are actually just being careful) and so takes away people's confidence in the process.

And they do listen to this kind of feedback, at least sometimes. When I had one of my dcs by emergency caesarian, I had an extremely painful surgery site, and yet the bins in the bathroom were not working pedal bins. I had to bend down to throw away my pads, and it was so painful. I wrote and pointed this out, they wrote back to me to say they had bought new bins. A little thing but I am sure I was not the only woman to use that ward, who had a painful stomach after childbirth.

...just read your post saying you need rest and nurturing. Obviously that comes first, the letter suggestuion was just if you wanted to 'put the feelings to work somewhere' after you had got your energy back.

When you are feeling up to it, as well as PALS perhaps contact the LD and autism liaison nurse. Now I know not everyone with autism has a LD, but in the majority of hospitals the LD liaison nurse will help anyone with autism whether they have a comorbid LD or not. They can help with making reasonable adjustments e.g. an appointment first or last when they are less busy, a double appointment so if you need more time you don’t feel under pressure, having the music off, somewhere more sensory friendly to sit, staff with better communication skills (departments often have at least one member of staff who has more understanding of neurodiversities), they can even meet you at the car/taxi so getting to where you need to go is a smoother experience. Also have you asked about hospital transport?

they are not fucking silly if you are autistic and bothered by them.

I am not autistic either, but your description of your experience sounds very similar to my first mammogram (and the second - didn't go for the third).

My experience with the breast clinic where I was recalled, and my latest screening mammogram were much different with staff who were just better at explaining what was going on and more helpful about the positioning etc. so it doesn't have to be like that.

You can use your post above to give feedback to PALS. It is really good and explains well.

I don't have any suggestions I'm sorry but I do completely understand how overwhelming is upsetting that was for you. I would have felt exactly the same!

Do you have any self soothing strategies you can use now that might help you to recover?

Having a mammogram is a pretty awful experience at the best of times, but to feel so disorientated and overwhelmed must have been dreadful for you. I'm sure at times of extreme stress the last thing you need or want to do is explain how your autism affects your perceptions. Its unlikely to be on notes they breast clinic have just for screening. Would it be an idea to keep a sunflower lanyard in your bag and just wear it in small settings like this to alert staff that you may be finding a particular experience overwhelming? Pretty much everyone knows what they are for, so they may start the conversation for you and make adjustments for your ND? Obviously it will come off for the test but by then they may have understood your distress and helped you?

I'm sorry to hear of your experience, well done on getting through it though and successfully having your mammogram. I'm a radiographer myself and recently had my first mammo. It wasn't easy and I had to be properly positioned several times by the radiographer, I hadn't a clue! I don't work in that specialty. I work in general radiography and regularly have adults and children with autism. If informed in advance, I ensure to give that patient a double appointment to allow for extra time if required. Next time you have to go for something like this, please phone in advance and let them know of your needs. The staff will do their very best to accommodate you and help you feel more comfortable. We all want our patients to leave our care feeling well looked after and happy with the treatment they received.

I had mine done at a mobile unit. You may find that less stressful OP.
The only people in the unit at any time were 2 members of staff and one patient. Drive to car park, park, wait for appointment time, go in. No chance to get lost in a building. I was only asked my name and address once as there was no way for them to get muddled.

Thank you everyone, sorry I took a while to reply, I was feeling a bit overwhelmed with it still and took a few days to start to feel less rattled.

kittyclarke that was reassuring and interesting to read, thank you. I think part of it is not feeling autistic 'enough' to request special treatment. I can mask very well a lot of the time and I struggle to feel my difficulties are worse than anyone else's. For instance a lot of people here have said they are NT but hate mammograms and find them painful or stressful. Couldn't all of those people benefit from extra time as well? I don't know at what point my autism makes me valid for extra support when I am actually capable of getting through the experience without it. Although the fact it took me several days to get over it is making me doubt my own words. It's a bit of a struggle in my own brain to know what's for the best.

TeenPlus I'm sorry you had a difficult experience too and thank you for the suuport. Thank you for the suggestion about the unit, unfortunately I don't drive so that added extra complications. I didn't want to tell the taxi driver I was going to the breast unit, and wouldn't expect him to know where it was anyway, (tucked away in the hospital grounds not sign posted), so we would have had issues finding it I suspect even if I'd have asked him to drive there.

It was a mobile unit and there was only one member of staff and me in there, but it didn't seem to make it easier sadly. I don't know why they asked my name, dob and address repeatedly but it was when I entered the examination room, during the scan and then again at the end. It didn't make any sense and added to the feeling of dystopian weirdness! I am sure there was a reason but I have no idea what it was.

I do hope you are feeling better after your stressful experience now.

inheritancetrack thank you, I had never thought of wearing a lanyard. Aren't they used a lot these days for people who are exempt from mask wearing? The message seems to have been diluted a little perhaps.

"at times of extreme stress the last thing you need or want to do is explain how your autism affects your perceptions."

Yes that's exactly how it was, thank you for putting it into words. I hoped it would be OK when I got there, and then when it wasn't, I didn't have the ability to ask for help or explain my distress. I expect most ND people have experienced asking for help or showing emotion and being told 'don't make such a fuss', 'what are you worried about?' 'it's nothing, don't be silly', etc. So to communicate my feelings makes me feel very vulnerable and at risk of being dismissed or belittled. I usually try to hide if I am upset or struggling for that reason.

IncompleteSenten I love your name. Thank you for the kind understanding comment. It does help to know others get it. I am not very good at self soothing but I appreciate the thought.

Melroses that makes me wish I had experienced more communicative staff, it definitely would have helped. I am sorry to hear you had difficult experiences too.

BlackeyedSusan I'm sorry if I annoyed or upset you, I know I shouldn't minimise my feelings. I understand it also minimises other people's experiences when I use words like silly. It's just a habit from years of internalising that kind of message.

Extremelybumpy Thank you for all of those thoughts. I haven't ever contacted anyone asking for extra support for my autism so it would be a new experience. It does sound a good idea but also a bit daunting. As mentioned above, I struggle with wondering if I am autistic 'enough' to deserve extra help but I will give it some thought.

BarrowInFurness I am so sorry you have not been able to go for the scans. Is there anything that could help you to attend? I don't want to pressure you or worry you but the importance of it is strong in my mind at the moment because my sister just got diagnosed with breast cancer after a routine scan. I understand it might not be possible for you though and obviously it is your decision.

candycane thank you so much for all those suggestions. I am sorry you had that difficulty after your c-section but it's wonderful your feedback was listened to.

I don't know if I feel up to giving feedback but all the things you mention are sensible and I like your idea of framing it in that way rather than as a complaint. To be fair to them, there was a map, but it didn't really show the suggested route and I have dyspraxia so it's not a strong point with me anyway. I did see signs for the breast unit and followed those but that turned out to be the wrong place. I had even worse trouble trying to get back to the main entrance afterwards to get a taxi home... I think it is just quite a confusing building but my disorientation made it a lot harder.

There was also a leaflet about breast screening but none of it prepared me for the odd and awkward positions I had to get into and the fact it would be hard to follow the instructions. Now I reflect on it that will also have been my dyspraxia making it hard for me. I couldn't picture what she wanted me to do and being given multi stage instructions on how to move or stand is also a challenge. I had no idea my dyspraxia was going to be relevant or I would probably have mentioned it at the beginning. But from experience NT people can't always imagine why things they find easy are hard, even if you tell them about it, so they don't know how to help you.

Thank you to everyone who has answered and I do apologise if I have missed replying to someone. It has really been helpful to talk it through and I am grateful for a sympathetic place to speak about this.