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Pa.28/4/2024 Anyone who has ever met my father, Herman Van Bostraeten, knows that, when he writes a detailed book review, he does it as objectively as possible. The idea that anything his daughter produces, is by definition excellent, would be insane.
As such, I am intensely proud that ‘our Pa’ - with his background as historian and archaeologist, once representative of the NFWO (National Fund for Scientific Research), later teacher at the Saint Barbara's College in Ghent, Belgium and also author of multiple articles for scientific and cultural magazines and of his book ‘De Merovingische begraafplaats te Gent – Port Arthur en de nederzetting Sloten’ (The Merovingian cemetery in Ghent – Port Arthur and the settlement of Sloten) which was awarded the Pro Civitate Prijs voor Geschiedenis van het Gemeentekrediet van België (Pro Civitate Prize for History by the Municiple Credit of Belgium) in 1966, and published by this organisation in 1971 - wrote (read: typed) the following considerations about ‘Recognise ME’, my memoir about medical gaslighting, which is to be published on the 15th of May by Raven Crest Books. Anneke VLIEGEN, Recognise ME. A book review. In truth, it has been years since I read - both in form and content - such a rich, complex and layered book as Anneke Vliegen’s Recognise ME. The subjective - what else could it be? - memoir of this author appears, upon critical reading, to be a report, as objective as possible and chronologically structured as it should be, of her evolution from carefree child into adult, spouse and mother, for decades a victim of medical gaslighting. This term - also used in medical circles - means (roughly speaking): if we, scientists, are at a loss about a condition, then it most likely resides in the patient's mind… (As if that would provide a reason to stop searching and helping…) This account of an ever-present battle to survive honourably with a chronic illness, and the considerations of the writer about her own position and behaviour in addition to those of her entourage - reads as fluently and is as engaging as a Swedish thriller: a surprising story full of twists and turns, as unpredictable as the patient’s condition itself.
These questions would be pointless, should they fail to point towards clear answers, or at least to relevant reflections:
The answers have never been formulated. Has anyone ever given them any thought? If so, it’s likely to have been the victims of the lack thereof, rather than those within the circles that could/should (want to?) implement change… These deliberations alone lead to appropriate and applied social criticism… In Recognise ME clear examples are presented. Are politics about steering government towards prosperity and - even more important - towards communal well-being or are they about the battle for power to be allowed to make that happen? And does that work within our, the Western world’s, ideological model? Or elsewhere? More questions than answers. You won’t find the latter in this review, anyway. And who is going to disapprove of that? One thing is clear. ME and chronic conditions in general, form part of a societal context, and create tension between the individual and their environment, between those close and involved and those further away and indifferent. The art to survival is dependent on developing enough self awareness to keep adjusting to the ever changing situation, based on experience and introspection on the one hand, and on the other creating a sizeable and strong enough network of medically and therapeutically trained, nursing and caring, committed professionals, forming a cooperative multidisciplinary team. But doesn’t the most important factor remain the support and understanding of friends and Friends? The answer can be found in the question. Recognise ME is not only a memoir, it is also a bittersweet book about hope and love. In the end light will need to enter the tunnel from the outside; meanwhile there is clarity on the inside through growing individual radiance and that of a sympathetic environment in various areas. This review is certainly no mirror to Recognise ME.
Anneke herself has suffered this culture shock twice, once upon her arrival on the island and years later when she returned to Belgium… There are worse things to worry about! Life as it is, with a smile and a tear… Herman VAN BOSTRAETEN Özdere (TR), 25 april 2024 Recognise ME is already in pre-order as eBook.
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Scales.21/4/2024 Pain
On Facebook and Instagram I run a weekly section on what helped me in terms of medical gaslighting. That led to a discussion about describing pain. There is some frustration among patients and nurses alike about the use of pain scales. This is a common way to establish the level of severity a patient is experiencing. At its simplest, it consists of the question ‘What score would you give your pain, between 1 and 10?’ Sometimes visuals are added, consisting of colour gradients from green to red, happy to angry/hurt faces, or rulers. A Google search on ‘pain charts’ will show you a variety. Some have basic descriptions on them, like ‘Mild pain’ at 2 and ‘Very severe pain’ at 8. The advantages are that it is a quick way to establish the need for painkillers. Anything from 4 upwards grants consideration. It also gives a point of reference to find out if the medication has worked. It can easily be performed by anyone on the team. Frequently students get landed with recording the score. On the other hand it is very limited, and leaves a lot of room for interpretation. How is anyone to know how to score their pain? The usual reply to that is that any answer is correct as it is entirely subjective anyway, so, ‘Go with how you feel.’ I would argue that if the intention is as described above, that is justifiable. For patients who have been subjected to medical gaslighting this is particularly hard, though. They have learnt to doubt their inner compass when it comes to their health, and their experience of pain and any other symptom. They discovered that being honest leads to ridicule and disbelief. Also, it stands to reason that chronic pain sufferers are likely to rate pain differently than those for whom it is a rare occurrence. It helps when more context is given about the interpretation and what is expected. Only, there seems to be confusion about what that should be. Depending on place and person, the guidelines vary. A 10 can be seen as the worst pain you have ever had or the worst pain you can imagine, for example. The second is likely to be higher. And by that measure, how does the 10 of someone whose worst pain was when they stubbed their toe against a coffee table compare to that of someone who was once severely injured? There are inherent problems with quantifying qualitative information, anyway. As long as it is a case of comparing higher and lower within one individual situation, it should be fine. The natural tendency is to start applying math, though. Is a level 9 three times as painful as a 3? And if your groaning knee gets a 2 whilst the headache you have at the same time warrants a 6, does that make an 8 in total, or a 4 as average? Some scales give detailed descriptions of what each score means. An 8 for example might be described as, ‘So bad it keeps you awake’. Again, there are many and they each fill in the details in their own way. A 10 can be screaming with pain in one, and having turned completely silent in another. It is clear then that there is value in seeing these evaluation tools as an opening to a conversation, one in which the professional guides the patient into and through their own description of what they are facing. That takes skill and time. There are other tools that can aid this process. Lists of words that can apply to pain exist, as do assessments based on observation. Gingerbread figures can be used to indicate place, severity, type and recurrence using distinct colours and markings. The same Google search will bring you to this article which presents a collection of them. There is indeed a lot more to say than how much it hurts. The better the patient can express what they are going through, the more understood they are likely to feel. In terms of the trust that has been damaged in gaslit patients, this can be vital to establishing a therapeutic relationship. Again it is clear how important context is. In an emergency room speed is of the essence, whereas a pain clinic requires detailed understanding. Taking the time to explain that is a worthwhile investment. A therapist of mine pointed out to me that in the Western world we tend to describe pain in combative terms. We will say our head is about to explode, we are being kicked in the gut, it feels like a knife is cutting into us. In the East, apparently, more creative and peaceful terminology is used, ‘A bear is dancing in my head’. I bore that in mind when writing my book, and concentrated on how each episode felt specifically. It led me to descriptions like Lilliputians appeared to be playing on a rusty seesaw in my lower belly, a cablecart travelled through my body, and sharp, sour liquid seeping into my muscles, joints and organs. Picturing what it feels like, makes it possible to put words to it that others grasp quickly. Perhaps if we learnt to do that more often, our vocabulary would expand as we become more comfortable with its use. That would save time in coming to clarity. If this was normalised, patients with a medical history that includes gaslighting, would have less reason to be afraid when voicing what they feel in their bodies. The gap between chronic and acute illness would naturally close. What are your thoughts? The talk I refer to was held in Dutch. If anyone would like me to host a chat about this subject in English, I would be very happy to.
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Normal.14/4/2024
It is a shame that it takes many chronically ill patients so much time and self-advocacy to get a solid team together to support their health and well-being. Once it is in place, the fear and dread remain at the idea of any changes. New people may bring back the old experiences.
The bigger and stronger the choir, the more it can allow for a false note from one person, or a pause for breath by another. It is worth the investment, in my opinion. On the whole I now have a brilliant team. By its mere existence it creates pressure on new professionals joining to step up to the plate. It appears to have an internal safety mechanism, which makes it easier on me, leaving a little more energy to spend on things that ensure my quality of life in other ways. Lately, of course, most of that has gone to my book ‘Recognise ME’. To a lay person it may sound odd when I say what a relief it was to hear my GP almost finishing the sentence she was inadvertently about to utter, ‘in other circumstances, I might say chances of this happening are slim, but you are not no…’ I laughed, as did my husband and the doctor joined in. It is a wonderful acknowledgement, rather than an insult, when a physician states I am not normal, if it means they are prepared to expect the unexpected. This was the case, as I consulted her about the ongoing abdominal issue. The pain is still at a level at which it was initially assumed to be due to kidney stones. That should give some idea as to what I have been going through for weeks now. I have an appointment with my favourite gastro- enterologist at the end of May. It has been years since I saw him. He has moved to a university hospital further away and become a professor there. He was always clued up on my combination of conditions, and willing to work in tandem with me. He is worth the wait and the drive. The GP and I were speculating what could be the cause. We were trying to decide how to deal with it until we know more. Tears rolled as I expressed my fear at having countless investigations performed again, only for the cause to remain a mystery until in years to come, by accident, proof that there is a physical issue explaining it all is found. Together we agreed to try some medication that helped in a similar situation over 20 years ago. Only, it turns out it is off the market at the moment. Honestly, if any of you happen to have a spare packet of Lynestrenol (a.k.a. Orgametril) lying about, please send it to me. Equally, if you know where I can get one (preferably, legally…), please let me know. Meanwhile I have tried to identify patterns in response to lifestyle, but it is becoming increasingly clear that gives me precious little control over the symptoms. Painkillers are, again, the answer. I am trying to stop myself from seeing this as a failure, after having managed to reduce my heavy schedule to almost zero after my neck operation. Thankfully my memoir and its launch have offered distraction. It is, also again, a balancing act and a case of prioritising to get done what needs doing. It is pretty much as Justine Steckling (a.k.a. Bipolar Beauty) and I discussed in relation to our recent interview. The fact that we look like we are managing, despite both claiming to be in severe pain is due to being well-practised. It has reminded me of a lecture on optimum stress levels, which was part of my OT training. With the support of my family, my publisher and my friends, I am managing to keep the pressure at the exact point where it motivates me to perform at my best, accepting that that best is affected by the circumstances. Exciting things are happening. We are set to go to the UK mid-May for the launch and to give a few talks, including a couple for the University of Leeds. I will be speaking to ME-patients in New Zealand online, I believe that is in the summer. The pre-publication version is almost ready, a press release has been written, the official photographs from the shoot have been received, and we are set to start receiving pre-orders soon. If you would like to be kept informed and receive invitations to any upcoming events, make sure you are on my mailing list!
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Publishing.7/4/2024 irst and foremost, I want to thank Jean, my husband, for stepping in last week. I was in my usual half-sitting-half-lying posture in bed, with my chromebook on me staring at the screen. I had words in my head, things I wanted to share with you. Pouring them onto the screen was beyond me. He saw me and offered his services. That is the kind of man he is, the kind of man who is kind, and loving, and understanding.
He has been by my side for almost 20 years now. We have been through a fair bit together- you can read about it in ‘Recognise ME’ soon. These last few weeks have been hard in a way that we are used to dealing with. The abdominal inferno in me is still raging. It stops me from giving my back and neck the care they need. I am keen to avoid a vicious circle. There is medication to try. It will be available from the 12th. For now it is a case of suppressing it with painkillers as much as possible. The appointment with my favourite gastro-enterologist is scheduled for the end of May. Please, keep your fingers crossed for me that the tablets I will be getting in a few days’ time will help me through everything that is involved with the launch events. So far, our years of experience have helped us get done what absolutely needs doing. It is a precarious balance of activities, one we will probably pay the price for later. At least it means many things to look forward to are being created. The proofreaders worked amazingly fast, which has taken the time pressure down. It also meant I could look through their suggestions and have a last say. I am so in awe of their work. This publishing process takes special people! There is more to it than I realised. It has reawakened my joy of learning. The most important lesson: it is ok to rely on other people and their specialism.
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Backup.31/3/2024 It's been 4 months since I've had the pleasure to write a piece for this blog.
A lot has happened in those 4 months, resulting in Anneke being incapable to write today for you. So, as a good husband behooves, I'm stepping in. I'm not a qualified writer like Anneke, but I'll try to make this enjoyable to read. In the last 4 months we've had both really bad times, but also very good times. For me, a disappointment was the postponement of Anneke's neck surgery, for seeing her suffer causes me, even after nearly 20 years, major heartache. However, as I got a reasonable explanation, I could handle it, albeit not happily. Holiday period was jolly, mostly, and the new year "blessed" the three of us with a visit from Influenza-A. It stayed for over a month and was a quite disruptive presence. Despite that, Anneke steadily worked on the revision of her book that will be presented on May 15th 2024. As I was given a right of veto over what was written about me, I got the opportunity to have a reading of the first draft as well. To me, this was a really emotional period, both because it reminded me of the good times, but also of the darkest times in our relationship. Tears of joy and happiness, as well as of sadness and pain were shed every time I read it. When the final draft was read, it still hit me hard in certain passages. And even though I could, I decided to not use my veto right, because the book would lose valuable insights of how we deal with adversity. Currently Anneke is struggling with heavy abdominal pains, first thought to be a kidney stone, but everyone is convinced by now that it is something different. And she won't be able to visit the gastro-enterologist until the end of May, when we're back from England, where the launch will be held. We're still in the process of organising the event which will take place in or around Leeds, West-Yorkshire. If you'd like to join, let us know as soon as you can via the contact page as it is likely that the number of people who can participate is limited. Hope to meet some of you in person there. Jean
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Quickly.24/3/2024 Given how this week has been, I am just going to offer you a quick, and probably clumsily written update and leave it at that. Some of you will have noticed I have been quiet on social media. I am hoping to pick up the pace again soon, but for now I had to accept whatever consequences the algorithms have in store for me. I was admitted to hospital a week last Friday via the emergency department. Speculation was that the kidney stone that had been seen on the scanner was causing the colic pain. While I was there, my manuscript came back from a second round of professional editing, with a deadline for the corrections. I do hope you are all going to read it and think it is the bees knees, as I have been doing everything I possibly can to make it the best it can be. Of course there are a number of people I have to thank for helping me do that. I hope they all know how grateful I am. I was discharged on Monday, with follow-up tomorrow with the urologist and an appointment with my favourite gastroenterologist at the end of May. I found that difficult, this doctor now works in a hospital a fair drive away, but I trust him implicitly. He has profound knowledge of my various conditions and is able to consider the big picture. I might be seen earlier by someone new to me closer to home. Spot the patient who fears new doctors, and guess the reasons why… The choice I made does mean I am likely to be doing my launch tour, if you can call it that, in the same dilapidated state I am currently in. The pain is kept under control with medication and heat pads. Travelling to the UK and to a few places there will have to be planned extra carefully. Actually, I might be doing slightly better by then, if only I can shift this common cold that has seen fit to enter the scene since I have come home. So, while Jean will be reading through those last changes I have made, I will be writing a glossary. With a bit of luck I can send it straight back after that and focus on spreading the word. Again, if you would like to be kept informed of events etc… the best way is to subscribe to my email list. If you know of anyone that would be interested in a talk about medical gaslighting, or anything like that, please, let me know!
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Stone.17/3/2024 Did I tell you about my recent hospital runs? I am admitted at the moment with yet another mystery condition.
Three doctors seem to think the heights of pain I am in, which are currently suppressed by medication, are due to a 5mm kidney stone. Others disagree, and have convincing arguments: its position in the lower part of the kidney, which remained identical after 8 days; lack of blood in urine; all infection markers came back healthy. So, what could it be? Gastroenterology is the next specialty to get a say, hopefully tomorrow. Was it medical gaslighting when I was sent home from the emergency department being told nothing could be found, when this stone showed up on the scan? If you read it like that, you might think it was. My history with that kind of thing, could easily make me feel that way. There is other information to consider, though. For a start, this was an emergency department. They are there to take the urgency off the situation. That had been achieved with basic pain relief. The advice to keep taking that and see my GP if the problem remained, was correct, especially since their professional report to her detailed the findings that may be of influence as the picture became clearer. On a more personal level, the attitude with which the conversations were held made a difference too. I was asked whether the medication helped and to what degree. My levels of concern, and views on the need for admission were taken into consideration. It did come as a shock, but also a relief when my GP told me this stone had been found. That is fair to say. Would it really have made any difference medically had I been told immediately? At worst it could have meant I started to panic and cause upheaval in an already busy emergency department. Better to avoid that, I would say. As a clinical decision, I think it was a reasonable one to keep me in the dark. Similar things have happened since. My GP prescribed stronger painkillers, and advised to return to the hospital should they be too weak to get on top of it. After further investigations I was given the choice to return home to evacuate spontaneously, which could take a fortnight, or to stay and have the kidney stone removed. I was quick to go for the latter, though I had a lot more questions later, ready for when the urologist would come to see me. When he did, he considered another cause was more likely. He too gave me a choice. I could return home and be followed up from there, or he could keep me in over the weekend and transfer me to his gastroenterology colleagues tomorrow. He accepted that I had taken fright from the surges of pain shooting through me. He asked after other diagnoses, and understood how adrenal insufficiency could add to my fears. The emergency consultants, the radiologists, the urologists and my GP all had the opportunity to point the finger at me, to imply that I was exaggerating or inventing symptoms, to belittle my experience. All of them chose to treat me with respect and concern. Failing to acknowledge that would be making them pay for debts incurred by others in my past. I should do them justice as they do me, a therapeutic relationship works in two directions. Having said that, I am still nervous. That past does interfere, still, with the way I think and feel in these situations. What if my digestive system too appears to be entirely healthy and functioning well? What if that consultant does trigger the angst I was left with? What if all we end up with is a plan to continue to medicate against the pain until something changes? The helplessness could consume me if I let it. Being this ill makes that all the worse. There was mention of a potential gynaecological torsion in the initial report too. Only, since my tubes were taken out, I wonder how my body would manage that. Then again, it has come up with plenty of surprises before. Maybe this time it could conjure up some pleasant ones.
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Equilibrium.10/3/2024 When I was told recovering from my last neck operation would take a year, Jean laughed and said: ‘Make that three!’ He knows the workings of my body well. Whilst the bone structure has healed normally (Hurray!), the knock on effects last a lot longer.
Deconditioning took away my ability to use public transport, take short walks and bike into the village, which had taken discipline and effort to build up. Only recently have I been able to start redressing that again. Since my idea of using anti-inflammatory injection for the issues that are still to be addressed in my neck worked so well, I returned to the back clinic. It is starting to show results, even though I have had to cancel and adjust the exercises because other issues keep interfering. We went out for a brief walk in the rain last week. It was lovely to feel and hear the patter, but also to notice the improvement in my ability to walk uphill a little. Jean was out of breath instead of me. That is the after effects of the flu we had. It is still troubling all three of us. For my husband that means his airways are still affected. For me it is sudden bursts of extreme general unwellness often accompanied by a rise in temperature. The withdrawal symptoms I am still dealing with have now been discussed medically, and a minor readjustment has been made to my medication. It is hard to evaluate the effect, with all these other things going on, but I am confident it will help. And I was like a child looking forward to a school trip at the thought of having my first real professional photoshoot planned for Friday. The joy of the anticipation was energising. That had to be postponed, of course, after a visit to the emergency department, with suspected kidney stone, which turned into probable digestive issues. In fact it has been the kind of week that would give completely the wrong impression if I explained any part of it separately. It is one of the things that makes it difficult for patients with conditions like mine: chronic, rare, dynamic, barely visible. Hearing about the incident and seeing the photographs of the morning after is likely to lead people to some assumptions. They would be right to think I am out of sorts. I am. My tummy is still hurting, I feel done in and my fuse is short. At the same time I have been making corrections to my manuscript day in day out. I have often mentioned having about 4 to 5 functional hours a day, on average. Those last two words are the important ones here. I have been using up many more this last week. Of course in setting myself a deadline for publication and getting a timeline from my publisher, I should have calculated this in. For anything expected of me, if I am to respect the limits of my body, the timings should be multiplied by about three in comparison to a relatively healthy person. This will either come back to bite me, or the balance will settle itself with the next crisis I will get to face. The other possibility, of course, is that this will be the start of a new phase in which I finally do get to expand on my usable hours. It would be a miracle, but hey, I have experienced some already. I am open to the possibility! Anyone only hearing about the efforts I have put into my book over the last few days, could jump to some assumptions too. They are likely to be the opposite of the ones related to my abdominal issues. Both would be missing additional information, like the way my husband and child have been looking after me to enable me to focus on the book, or the way I have tried to maintain some balance with other activities, albeit very low key, for fear of losing the progress I have been making. Now that I have sent my manuscript back, and especially as I am trying to recover from whatever is happening in my tummy, I will be taking it easier. Again, though, I will be aiming to reach a balance and keep doing the basics. There is skill involved in being a chronically ill patient intent on maintaining some quality of life.
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Revamp.3/3/2024 Putting Rare Disease Day in the picture on the 29th of February 2024, I focussed on medical gaslighting. It is the main theme of my memoir 'Recognise ME' which is due to come out soon. Its cover was revealed on the day as well.
The whole exercise of making the international awareness campaign stand out has taught me a lot. I used it to improve what I can offer here. I thought it appropriate to revamp this website. Have a look around. Let me know what you think. I was also able to expand my social media presence. I now have a Youtube channel you can subscribe to. There are a few videos there already. They will be added to gradually. I have embedded some of them with my downloads and links. My Instagram account is now connected to my facebook page, and waiting to be used. A big thank you goes out to Team Vliegen, for their patience, instructions and practical help in getting this far. In between the information I shared, I also posted songs. All of them have lyrics that can be related to from the perspective of a gaslit patient. The playlist was broadcast throughout the day. Having done all that, now my attention can go back to the book itself. I got my manuscript back from the editor. There are plenty of suggestions to work through to make it even better for you, my readers. So please forgive me for keeping this brief today. As they say: 'For now, I will love you and leave you', but also: 'I'll be back!' Those who like to be the first to receive any news had best subscribe to my mailing list.
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Rare.25/2/2024
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