Tag: ehlers danlos

How prevalent is the assumption that disabled people don’t work or don’t have responsibilities?

As a disabled person, I’m pretty used to being seen as a problem, especially in the workplace, and sometimes all the more even when “reasonable adjustments” are supposedly being implemented. For example, in my last secretarial post, discussions about supposedly agreed alterations to my working hours would begin with explicit statements about how I “had to realise how terribly difficult it is”. I was pressurised not to attend medical appointments or follow medical advice. If I was in any way assertive about my needs (not disability related ones) once “reasonable adjustments” had supposedly been put in place, I was reminded of the “great leniency” being shown towards me and how my boss was allowing things most firms never would. It got to the point that I explored this with a manager. Was there something wrong about my performance that they considered they were being lenient about – if there was I would much rather they openly told me what it was, so that I could try to correct it. Oh no, said the manager, and she went on to tell me pretty much in so many words that it was the fact that I’d been allowed to return to work after a period of sickness absence and that [what had been agreed amounted to reasonable adjustments] had been put in place! Once I dared to be assertive that whilst it was agreed that I was working reduced hours, there needed to be a plan for how urgent tasks that arose in my absence would be dealt with (it was not okay for me or for anyone else for them all to be left for my return on top of my usual full workload), I was told by my manager that everyone knew I could not cope with the job. From then on, bullying and harassment continued, along with continually calling on the fact that everyone knew I couldn’t cope with the role. This was despite the fact that, until the point that I had asserted my needs, all my reviews and appraisal had been excellent and I had taken on many responsibilities beyond my job description.

I left soon after, feeling I had no other choice as my mental health was deteriorating so rapidly. I made a formal complaint, but the lies in the company’s response and the regulatory body’s disinterest meant I gave up. 2 years since this started, the impacts on me are still considerable, especially intense self doubt about whether I can take on the responsibilities of a skilled job and the intense emotions I feel when I try to take on more responsibilities now. I’m a good way off returning to paid work but I know these memories will be something I battle with when I do.

Looking back, I feel that although the company I was working for made “reasonable adjustments”, they did so out of a sense of obligation. They made them on paper but were not really willing to discuss the practicalities. I did not hide my disabilities from my employer at any point but when I had a period of particularly bad health they became more visible. I feel that the firm continued to employ me out of obligation but from this point I was seen as a problem, an inconvenience, “terribly difficult”, someone who cannot cope. As soon as I asserted my needs (both relating to my disability and not), this was unacceptable to them. I was no longer wanted. Looking back I feel as though I was acceptable so long as I never spoke out, so long as I never dared assert myself because I was so grateful for everyone allowing me to stay despite all the problems I caused. Whatever happened they needed me to fit their impression of me as someone who can’t cope. If I didn’t assert my needs, eventually the ever mounting pressure would have got too much and I would not have been able to cope. When I did assert my needs, they took this as grounds to announce that everyone knew I couldn’t cope. Whatever I did, it came back to this. If I stuck to my contracted hours and a task went undone, I would be told off for not completing it. If I worked late to complete a task (sometimes specifically with a manager’s agreement or even at their request) I was told this showed I couldn’t cope with my job because no other secretaries worked late (untrue incidentally).

So, I wonder, how much of this was done malevolently and how much came from my employers’ assumption that disabled people can’t cope with responsibility or can’t do the job? Yes, in the later stages I believe their lies were malicious or at least covering their own backs so that should I take my complaint further I would have no case. However I am coming to think that their underlying beliefs about me as a disabled person played a large part. (It could have been that I was actually rubbish at my job from the outset but then why was this never reflected in my performance reviews?)

It seems a very backward assumption that disabled people can’t work. Then, the other day I encountered the assumptions of a total stranger who had met me for a few seconds at most, that I’m irresponsible and don’t work.

I was about to get off the bus when the driver sailed on past the stop despite 3 of us ringing the bell in plenty of time. By the time we got to the next stop this had trebled the length of my walk home and this over-exertion has now worsened my symptoms such that for the next 3 or 4 of days I’d be almost unable to walk at all and wouldn’t be able to leave the house even to get to my medical appointments. Someone who has no way to appreciate what life with a disability entails might not realise the extent of impact of having to walk a bit further. The driver was very rude and dismissive when I asked why he didn’t stop and so I thought it worth pointing out the impact it had on me. He would not apologise and lied saying that the bell hadn’t been rung and what was it to do with him. This being the last in a considerable number of recent bad experiences with the bus company that have left me dreading bus travel (recently I was shouted at and ordered off the bus because I asked the driver where the bus was stopping during a temporary diversion and wasn’t willing to accept his answer of “I don’t know I’m not a taxi driver”!), I decided to complain and asked for the company’s telephone number. The driver flatly refused to give any details. At this point another passenger came up, pushing into me, telling me “Just get off the bus, you [expletives deleted] idiot! It’s alright for you, all the rest of us have responsibilities and work to get to! Take the bus number you idiot, he’s told you [more expletives deleted].” On top of which the bus driver nodded and smiled, said she was absolutely right, actually thanking her. Pretty much encouraging her.

I was furious with the passenger as well as the driver and it took me some time to work out why I felt so strongly. Part of it was the driver’s refusal to apologise, refusal to admit he’d missed the stop and pretending the fault was mine and generally very poor customer service, which really gets to me as I’ve worked in customer service for years and feel strongly about how I’d treat other people. I also ascertained he missed the stop deliberately to save time, though that is something of an assumption. But I figured out that what really upset me was the implication in the passenger’s tirade and the driver’s support of her.

“It’s alright for you” whilst the “rest of” the passengers have “responsibilities and work to get to.” She made the assumption that I did not have work or responsibilities, that I was different from everyone else on the bus – why, because she could see I’m disabled? “Take the bus number you idiot, he’s told you”. She assumed the bus driver had given me the information I needed and I was too stupid to understand (he hadn’t). Again because I’m disabled? And I should “just get off the bus” – why did she find that it was wrong for me to stand up for myself? Are disabled people too much of an inconvenience to the “rest of us” when we do? Should I keep quiet because everyone else has responsibilities and jobs that count more than mine? The driver supported her being verbally abusive. Perhaps he was just hoping she’d intimidate me into giving up so there would be no possible repercussions for him if I made a complaint, but in the context it felt like him agreeing I was stupid, an inconvenience and so unworthy I don’t even merit decent customer service.

Am I being paranoid? Was it not actually to do with my disability? Was the other passenger setting me apart from her and the rest of the passengers for another reason? I don’t know. Instinctively I feel it was very much to do with my disability and perhaps the fact I wasn’t behaving in the typically meek, apologetic, unobtrusive way it seems acceptable for disabled people to behave.

Hmmmm. To be continued at some point, I think….

Ginny xxx

 

Post op confused.com

Post op confused.com

I’m sorry for such a long silence. On Thursday last week, I had my small operation. It has taken me a few days to get back to the point of being able to write again. Anaesthetic and I are not the best of friends so the first couple of days after the op were not very nice. Now it’s good to be back! I’ve missed you all and I’m looking forward to getting caught up, both here and with your lovely blogs. I still have pain but it’s manageable.

The operation did not go in the way expected and it isn’t medically bad, but it is confusing.

The plan of the operation was to do a laparoscopy and laparotomy – look inside the womb, look outside the womb and at the surrounding organs, remove the endometriosis and insert the coil, all under general anaesthetic. (I don’t want to bore people going into too much detail as I’ve posted on this several times before, however you can read more about it here , here and here.)

I had been told for around the last 2 years that I have endometriosis and that this is what has caused the last 10 + years of heavy, really long and painful periods, bladder problems, constant pelvic pain, back pain, amongst other things. So I was expecting a big benefit of the operation to be removing the endometriosis and that therefore my symptoms would reduce or go away afterwards.

When I saw the consultant right after the operation, he said that they found no endometriosis at all. I don’t have it. It was the wrong diagnosis. They cleaned out my womb (eeek!) but found nothing wrong with my womb or the fallopian tubes. There were no cysts and no growth of cells outside the womb or onto other organs like the bladder, which they had previously been sure there would be. They did insert the coil.

I was stunned. Of course, it is really good that I don’t have endometriosis. From the reading up I have done over the last couple of years (for example, here), I know what a terrible condition it is. On the other hand, this outcome has left me really confused. It has left me without any specific explanation for my symptoms. It means I do not know whether or not I am going to get the improvement in my symptoms, especially the debilitating pain, which I had so much hoped for after the operation.

Also, I felt really stupid, fake and that I must be imagining it all. I shouldn’t have had the operation – yet again I’m a fake – my mind was screaming at me. The doctors were kind and they said it wasn’t my fault and wasn’t wrong that they did the operaiton. It was their decision to do it and my symptoms had worsened to the point that they needed to do it, if only for the exploratory purposes of finding out exactly what is going on. Endometriosis growth typically does not show up on any kind of scans – the only way to find out 100% for sure if / where it is present is to operate.

It’s a good thing they have checked out the situation. If it was essential to look inside, I almost kind of wish they’d have done it years ago rather than giving me all different kinds of medications potentially to treat the wrong thing. However, I do understand some women find that whatever the exact problem is, medications like the Pill and tranexamic acid can manage the symptoms and that’s how it’s treated, even if you can’t remove the root cause (kind of weird to try to get my head round).

Everything feels very confusing. My head is getting noisy at times with all the thoughts of being fake, having imagined it, having deceived people, specifically having deceived people into helping me and treating me. Fraud, fraud, fake, you made it all up, liar…. the voices say. When you have that struggle in your head already, having a load of “unexplained” physical symptoms that are horrible in themselves but are hidden and not able to be proved (you can’t see them on a scan, for example) is horrible and really triggering.

The doctor said that there could be a problem with my ovaries. I’m not sure exactly what problem he is thinking of. I was still reeling from the “no endometriosis” news and was still confused and foggy from the anaesthetic. I will have to check that out with my GP. The doctor also said that some women do have really heavy painful periods simply because of hormonal problems.

The coil I’ve had fitted should help with that. It’s definitely a plus that they have been able to insert the coil. All being well, I can have it for 5 years before it needs to be changed. It is good that it was done under the anaesthetic because for various reasons, some to do with the effects of the sexual abuse when I was a child, it is too difficult for the doctor and painful for me to fit it without anaesthetic. The doctor explained that the coil can take 3 – 6 months to settle in. (Seriously? 3 months? What’s it up to for goodness sake – is it popping out to buy a new 3 piece suite at Ikea? 😉 Still…) Then, it’s hoped that I will have no monthly periods, or that they will be much lighter.

This means the next step is to wait to see what happens in the coming months with the coil, and to find out what may be the issue with my ovaries. In addition, I will potentially need some more investigations. They may need to look further into what is causing my bladder issues, since it wasn’t endometriosis growths. This could be part of my fibromyalgia, or the neuropathic symptoms.

I’m also at the start of being investigated for a potential connective tissue disorder. I’ll leave that one for another post as it’s rather a long story, but I have just found out that it can contribute to a lot of gynaecological problems, as well as joint problems and pain.

Thank you so much everyone for your support in all your lovely kind comments leading up to the op. I do feel guilty now after you gave me all that support and it then turns out to be not at all the diagnosis that it was thought to be! I’m sorry. I feel really bad for posting before having been so sure it was something it wasn’t. It was what the doctors had told me it was, but I still feel bad. Your encouragement and friendship still really means a lot whatever the ultimate diagnosis and treatment is. I’m thankful.

Ginny xxx

[Image sourced from memecenter.com – with thanks]

A super quick question about BPD / PTSD and physical pain

This is a theme I want to come back to in a longer post. I have been meaning to write something on this for a long time. For now, a very quick question, if I may.

As well as my mental health problems, I suffer with fibromyalgia, endometriosis, chronic back pain following an injury, some degree of hypermobility and potentially now a nerve pain condition as well.

I have noticed from therapy and support groups I have attended that pain conditions and joint conditions seem to be suffered by lots of people with personality disorders, PTSD / complex PTSD and/or who have suffered abuse (often in childhood). Certainly in a group I participate in at the moment, I think a higher percentage of us suffer these physical problems than you would expect to find in a random sample of the general population, if that makes sense. I have also read a couple of articles on this theme recently.

I don’t want to push people to disclose something that feels too personal so please don’t feel any need to answer. I just wonder if anyone reading this also suffers pain conditions as well as mental health difficulties? And do you find any interaction between them eg when one is worse, another also is? Or do you feel that psychological things you have suffered have had a physical impact as well as an emotional one? If anyone did want to exchange thoughts on this I’d be really interested.

Ginny xx