EMDR: a miracle therapy?

Most people have heard about EMDR, a therapy that Shapiro created. It’s supposedly THE treatment for PTSD or other trauma related things. What bothers me is all the websites that say how well EMDR works. You’ll read phrases such as: “you only need 3 EMDR sessions and you’ve gotten rid of your PTSD”; “it has a 100% succes rate”; “it’s not as emotionally hard as other treatments” etc. Or you’ll read how it works for everyone and every kind of trauma or multiple traumas. When I tell someone I’ve PTSD, they usually immediately ask me if I’ve done EMDR. I haven’t. Most people can’t accept that I haven’t and still dare to say to people that I’m trying everything. EMDR isn’t right for every trauma and every person. It can go (drastically) wrong too.

There already are many articles on how EMDR works, so I don’t want to go there. Except that, according to all the information I could find, so far researchers don’t really have evidence that moving your eyes (or other left-right movements) actually work for processing. They do have evidence that the therapy works, they just don’t know how and if the left-right movement truly help. The only research that did have this evidence, was done by the creator of EMDR herself. That research was based on a group of people who got EMDR sessions where they could talk as long as they needed and show all their emotions. And the control group who only had 20 minutes and then had to leave. She also claimed that she could cure everyone within 1 hour with her EMDR. The claims they make about EMDR are now less high, but still high. However, I don’t want to write a whole article on EMDR being a placebo or anything. And even if it is a placebo, if it would work for me to lessen some of my symptoms, I would still be glad. What I do want to do with this article is make people a bit more cautious. It isn’t a miracle therapy or suitable for everyone and I’m worried about the extreme focus of the professionals on EMDR for PTSD.

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[Photo of a woman holding 2 fingers in front of another woman’s face at a small distance]

It’s very tough to go through EMDR, because it triggers a lot. You need to have a safe place where you can recover the rest of the week, preferably with someone around you who you trust and can help you. You might need to (temporarily) stop work/school etc. Your symptoms will first become worse and if the therapy works for you, will become less. Sadly, I’ve heard enough stories not ending with the symptoms becoming less. I’m not saying you shouldn’t do this therapy. I just want to shine a light on the other side of the story, since we can read a lot about the miracles. You can find more about bad experiences with EMDR here on the PTSD forum.

I think it is often underestimated how hard EMDR can be for the client. They say you’re in a safe place during the session (which often takes 45 minutes). It might take quite some time before this therapeutic environment can be a safe place for you, at least in my experience it does. When I read that it happens in a safe place, I immediately wonder: what happens when you leave? I mean, you can’t stay in the safe, therapeutic environment till your next session. It’s something to think about. You don’t want to go in unprepared, this also applies to the people supporting someone going through EMDR. The memories and flashbacks won’t stop just because the 45 minutes are over. Sadly, PTSD doesn’t work that way.

I think it’s very important that professionals first establish if the client has enough tools/techniques to handle their emotions, BEFORE starting EMDR. So far, I’ve only met one psychologist who talked about this with her clients. It’s so important that you can handle yourself, before you start “diving in the deep”. And I’m sure that if professionals give it a thought, they wouldn’t want to trigger patients in automutilation or suicidal tendencies. But they often don’t think about this.

Another point of concern is that EMDR doesn’t work well for multiple (and/or long-lasting) traumas or complex PTSD. Having multiple traumas really multiplies the complexity and difficulty. Not a lot of therapists can deal with multiple traumas. As always it’s very important to know beforehand, how much knowledge and experience your therapist has.

If EMDR is the right way for you, I’m happy for you. I’m not trying to discourage people to try any treatment. I’m just trying to spread some awareness, because as for every treatment: you need to think carefully about it, before trying. Every treatment can have (serious) negative side-effects. This doesn’t mean it’ll happen to you too, but like I said, I’m worried about the massive amount of one-sided information on EMDR. There is no treatment that works for everyone or make you forget every bad thing that ever happened to you.

Take care while being on your healing journey!
Photo source

 

 

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Letter to my gynaecologist

I’ve translated the letter I sent to my gynaecologist. She never replied, but it did give me some closure, because I could finally tell her how I felt about everything she did. I really wanted her to understand how she hurt me, because I don’t want her to hurt other women (she only treats women) in the same way and it would have helped me heal from this trauma. I still don’t think she actually understands, but writing this down and actually sending it to her did help me a lot. 

Dear Doctor,

For a long time, I have been in doubt whether I should do something with my complaint in regard to your consultations. I have decided to try to put it into words again. A while ago, I wrote you an email in which I tried to explain what went wrong for me. Because of that email, we made an appointment to talk about it. At the beginning of that appointment, you made it very clear we were not going to talk about my previous experiences and feelings. You treated it like a regular appointment and I was not allowed to say anything about my complaint. Even during this final appointment, I felt as if I was not allowed to make my own choices. I felt pressured by your decisions and there was no space to talk about the things I wanted to discuss. I have tried this again after the appointment by sending you another email (for example that I wanted to try TENS).

Your responses hurt me. First, it seems as if you underestimated my ‘history’, even though I told you about the severe consequences for me. You still did the internal exam (which I did not want). Then, I actually want something and you denied me. Later in your email you say that the pelvic floor physical therapist should decide, because of my ‘history’. Especially for a patient with my kind of history, it is very important that the patient can decide herself. It all comes down to: things you do not want to happen, will not happen and thinks you do want, will happen, because this is the opposite of the so-called ‘history’. You have denied me this in two ways. There is nothing wrong with giving tips or consultation and agreement, but pushing and forcing is wrong. For me, it feels as if we have never been able to consult and agree, but you just told me what you wanted. You never asked me (regarding TENS) what I wanted and what I thought I could handle. Once again, you drew your conclusions without actually knowing me or consulting with me. It feels as if you underestimated the amount of knowledge and experience I have with myself.

The internal exam of our first appointment was against my will. I told you this and you knew about my ‘history’. You could not give me a medical reason why this exam was necessary, when I asked about this multiple times (just because you always do it, is no medical reason)  and you forced me to do it. During the internal exam, you treated me like I was only a piece of meat, that could not feel, whether it were emotions (panic) or pain. You did not take the necessary care during the speculum exam. Whithout a word, you opened the speculum completely as soon as it was inserted. This hurted me physically (I told you beforehand that I never had a fully opened speculum before, and now you even did it immediately, without pauses for my body to adjust). You did not respond or stop when I made it clear you were hurting me. During the exam you never listened/looked at any of the signals my partner and I gave you (not even my body trembling, wizened and trying to get out of the chair, or my partner asking you to stop). This exam, which I absolutely did not want but you forced me to, was a traumatic experience for me.

After the exam you told me you could not help me (and did not want to help with the painkillers etc because you did not know me). I usually had to come every 6 months, to see if the painkillers were enough and because I find it difficult to stay in touch with a doctor otherwise. I find it difficult to make contact when I have an issue or question. You put me out of gynaecologic care after our last (second) appointment and I actually don’t want to have contact with you anymore. But now I do not know how things will continue. Will there be a doctor taking over my case? Because I don’t know about this, I also do not know if your warning is a realistic one in my situation. There are other test results available which another gynaecologist could use and an exam against the patient’s will is against the law. So even if a doctor wants to do an exam and I don’t want this or not at that moment, this shouldn’t be a problem. Sadly, this went wrong. Despite not knowing if someone will continue with my case, I also don’t know what I want. The experiences I have with you are still too fresh and too painful, so maybe I will never go to a gynaecologist again. Although it might be good for my physical health.

When I received the pages you have written in my file, I was shocked about the many mistakes that are in it. There are mistakes on different topics: such as the treatments I had before, my use of medication (I absolutely do not overdose!) and that the exam went very well and with my consent. Instead of trying to get everything changed, I decided to have it destroyed.

I can understand that it was not your intention to hurt me and give me a traumatic experience. Sadly, it did turn out this way. I hope this letter will help you to understand and treat patients with a similar ‘history’ better.

I cannot emphasise enough how important it is that the patient can really talk and decide with you and that you are very careful about pushing people or forcing them. Besides that you should make sure that you actually listen to what the patient and/or her companion says and that you plan some extra time for the appointment, even if it is ‘only’ a conversation. It is important that you prepare well together before an exam. Things you could do for example: give detailed explanation beforehand about everything that will happen; ask what the patient does and does not like/what might be triggering for her during the exam and which signals she might give you (such as not responding to anything/being frozen or moving nervously with her fingers). We do not all have the same experiences and the same associations. For someone putting a hand on someone’s knee or saying certain words might be calming or encouraging, but for someone else it might remember her to her ‘history’, because the attacker did or said the same things.

Lastly, I want to report to you that I have already had contact with the pelvic floor therapist. She said that TENS for menstrual pain is not done internally, but externally (by using patches on the lower back). I wanted to tell you this, so maybe you can inform other patients about this treatment better.

Kind regards,
Mel (Hippo256)

P.S. I assume my letter will not be put into my file, or will be destroyed because this is part of the file that will be destroyed.

I am not so happy about my letter, I think I could have done a lot better. I wrote and sent it in a whim. Writing this and reading it out loud for the first time was very emotional. But I was already emotional beforehand and that’s when I got the urge to write it down. And now it’s a bit easier for me to talk or write about it. So I think I should be proud of myself, even though I could have said things better. I was trying not to insult her, because I don’t want her to be angry but I want her to finally listen to me. I hope by sharing this letter with you, this might help you when you’re having trouble with your own doctor. I was inspired by this Dutch blogpost to put my letter in a blogpost. Because when I read that blogpost, it really helped me. It inspired me, gave me some extra courage to share my letter and I knew I was not alone. Which helped me accept these things that happened with this doctor was not just all my fault.

My experience with orofacial (myofunctional) therapy – part 3 (conclusion)

This is part 3. You can find part 1 and part 2 here.

I have written about this topic before. You can find my two previous posts here (1) and here (2). In this little series I tried to keep a little bit of a diary/share my personal experiences along my journey with this (for me new) therapy. Now it is time for my (probably) last blogpost.

To make a long story short: I have quit this therapy early. I just could not work with this therapist. He would not respect my boundaries/physical limits, mostly regarding pain. My body is extremely high sensitive to pain and I need to be very careful with everything that I do. Because I also recover much more slowly from pain and I am more easily damaged. With this therapy I got ‘massages’ to make my jaw and neck muscles relax more. But these were extremely painful and I would be sick (flu like symptoms), having extreme neck pain and headache (and being unable to move my neck) for at least a week. This is an extreme response, so please don’t be frightened if you’re going to try this therapy. This kind of extreme response is not good for your body, the therapist even agreed to that. Every time we would make agreements on how soft his touch should be and that he had to stop if I or my companion (usually my partner a.k.a. fellow Hippo) asked him to stop or be more gentle, because it was hurting too much. But every time he would not listen to it and I have tried it multiple times with different people as my companion (and the goal was that I would be able to go alone but that went very wrong when I tried that). I have tried to talk to him and talk to his secretary and write it in an email and it would not do anything. I finally came to the point where I realised I had to listen to my body and protect my boundaries and that I had to quit. He would not accept that, but I eventually cancelled my last appointment and never made new one again. Like I said, I don’t expect you to have this same experience and I don’t want to discourage you. I will try to point out the positive and negative points I experienced with this therapy.

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[Photo of a physical therapist turning a patient’s head]

+ It is a combination of exercises, which you can do yourself as soon as you learned them, and of the therapist ‘massaging’ you. This is a positive point for me, because just doing the exercises did not work well enough, but the combination works a lot better (which I’ve experienced with other kinds of physical therapy as well).
+ You can do the exercises at home, so this will save you appointments. This might also be a negative. I, for example, find it difficult to do my exercises at home. But I am willing to go to the gym/therapist every evening. But maybe I am just a bit crazy that way.
+ It might not only help against the pain in your jaws, but it might also relieve headaches, ear pain, neck and shoulder pain and even back pain. My therapist also moved from primarily treating my jaws to primarily treating my neck after a couple sessions. Most therapists who give jaw therapy are also specialised in back and neck problems, so you don’t have to switch to yet another one, which I prefer.

– It can be quite a painful therapy, because they will put a lot of pressure on muscles that are already hurting.
– The therapist has to touch you. This was frightening for me, even though I did not take off my T-shirt and he never went inside my mouth (which might be necessary, this depends on your physical complaints). I was always chitchatting with him during therapy so that helped.
– It is normal to have extra pain or soreness and stiffness, tiredness etc. for up to 2 days after the the therapy. This is something you might have to take into consideration for when you schedule your therapy. This also depends on how the condition of your body is before the therapy, but I could not do anything for about seven days every time.

 

Personal conclusion/evaluation: I have the feeling that my neck problems have been worsened by this therapy (because he did it way too much and too hard). It does go a little bit better with my jaws, although it didn’t do anything against the grinding of my teeth have it when I sleep. I had hoped I would have slightly better results, especially because my neck problems are quite terrible now. And my anxiety has become worse, because he did not respect my boundaries and did not listen to me. I do think this can be a useful therapy and it is worth a try. But I would strongly advice you to listen carefully to your body and see if you have a match with your therapist. I have also heard more positive experiences than mine, so I hope your experience will be better. I don’t think I will try this therapy again, because it is just not made or my kind of body with chronic illnesses. Maybe I will try it again if I am able to find a female therapist, because they usually understand a bit better how much strength they actually have.
For now, I will keep wearing my splint at night and keep paying attention on relaxing my jaws during the day.

Photo source

Tips for a gynaecological exam

As a rape victim a gynaecologist exam was one of my biggest fears/nightmares. I couldn’t find enough information about how to prepare myself, how to make sure nothing would go wrong. Of course you can find the basic information on how it works, but that just wasn’t enough for me. I’ve a few tips gathered from my own experiences. I’ve also given the tips to gynaecologists and I’d like to share them with you in the hope that everything will go well. I’ve had very bad experiences (exam against my will) and not so bad experiences (exam went well, but it will never feel ‘good’ for me).

I’m talking about a “normal” gynaecologist exam, so not one straight after the rape to collect evidence. Of course these were the things that helped me, if you prefer to do it in a different way then that’s totally fine. I also haven’t been able to include everything I’ve ever found helpful, but I’m thinking about writing more blogposts about my experiences with doctors and tips I’ve come across.

First of all, make sure that you think your current gynaecologist is up for it. It was shocking for me to discover how little experience and knowlegde most gynaecologists have about treating/examining rape victims. They just don’t know how this might affect you and how to take it into account. How do you know if this gynaecologist if right for you? It’s important to know that you can always refuse the exam and can ask for a different gynaecologist (for example: I only want females).
1. He/she is calm, understanding and friendly.
2. He/she doesn’t pressure you to do the exam. And doesn’t get angry if you’re coming for the tenth time to try it and you can’t do it yet.
3. He/she doesn’t rush it and plans extra time for you.
4. He/she wants to prepare together before the exam.
5. He/she stops when you want, even if it isn’t finished yet.

With preparation I mean that he/she is willing to answer all your questions before the exam, tells you everything that is going to happen (unless you don’t want to know), makes agreements with you and you can tell him/her about the things he/she should or shouldn’t do. For example you can ask if he/she can stop every minute and ask how it’s going. Or you want the door to be locked (sometimes other people walk in) or you want it unlocked (because that gives you an escape route). Maybe he/she should not say certain words because the rapist said that to you, or maybe you don’t want him/her to touch your knees (the gynaecologist might think doing that will comfort you) etc. Very important to make this all clear, before you might do the exam.

I always want to get to know the gyneacologist first, so I don’t do it the first (few) time(s) when I meet her. I always take my partner with me, he holds my hand and can ask the gynaecologist to stop when he notices I’m frozen. Think about if you want someone else there too and where he/she should stand and what he/she should do. Do you want to be distracted or do you want to focus on what’s happening in the present? It both might help against flashbacks. Also make sure that the gynaecologist listens to that other person as well (some doctors only want to listen to the patient and tell me I’m “grown up enough” to tell them myself that they need to stop). Oh and very important: they aren’t allowed to force extra people on you: assistants, students etc. It’s very difficult for me to say no and I’ve also had bad experiences with some doctors who wouldn’t even ask. I personally think the doctor should not even ask a rape victim, but say no beforehand to the student.

It’s possible that you insert the speculum yourself or that you do the exam without lying in the chair/with your legs in the stirrups. If they want to make an echo, they might see enough with an external one (your bladder needs to be full for that). They can always try doing that first.

A gynaecologist exam isn’t a normal situation. If you don’t feel safe, don’t do it. There are other ways to examine if there’s something wrong (for example an MRI or some kind of self-test; I’ve done those two as well). And maybe it isn’t really that necessary to do the gynaecological exam. I’ve had doctors who wanted to do it, just because they always do it. No medical reason.

Last but not least, try to ignore all those people who will say/yell/scream to you that “you shouldn’t be afraid because the doctor’s used to it”. It’s about you, not the doctor. I wish you a lot of luck, strength and wisdom and hope everything will go well, if you ever decide to take an exam or have to talk with a gynaecologist.

My experience with orofacial (myofunctional) therapy (so far) – part 2

This is part 2. You can find part 1 and part 3 here.

In a previous post I already talked about how I got introduced to this therapy and why. Now I’d like to talk about how the therapy has been so far.

The first appointment went better than I expected. Just some talking and he gave me a couple exercises. Both my fellow Hippo and the therapist did them with me, so I wasn’t that ashamed when I had to open and close my mouth like a goldfish (well, ok I still was, but I hadn’t done it if they weren’t doing it I think, sshht..)
The second one was a surprise though. Somehow, because of the first one, I didn’t think he would touch me. I thought he would just give me some other exercises. That’s why, when my fellow Hippo asked if he had to come, I said I could try it alone (I try to do it alone, unless I’m certain that something tough will happen, such as touching). But he knows me well and of course I prefer he comes along. Now that I know what happened, I’m really glad he came. Thanks to him it still went well and I stayed calm. Otherwise I probably would have panicked.

We were talking about how it was going and suddenly he told me I should lie on the bed, with my head in his hands who were in front of his… well I was afraid I would be lying on a certain body part, but my fellow Hippo assured me that didn’t happen because of his hands. And if he would have pulled them away, I would be lying on his jeans he said (I don’t really agree with that part, although technically it’s true). He ‘massaged’ my ‘face’, including the back of my head and my neck. It really hurted, but I could lie still and don’t show it (I’m not sure if that’s a good thing. Some people say you should tell or show when it hurts and others don’t). My fellow Hippo and him were talking a lot so that created a little diversion. I even talked, while he was ‘massaging’ me. Funny though, since I told him I decided to skip my massage exercise because that one hurted too much. He told me I had to do it really gentle, so I almost wouldn’t feel my own touch. However, he really put pressure on it, so that was a bit ironic (and a surprise).
I still had some extra pain around my jaws the rest of the day and that lasted for a week. If you’re going to do this therapy, I hope me saying that doesn’t scare you. My body is extra sensitive to pain, so even soft touches hurt and the pain lasts longer.

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[Photo of a woman lying on her back with her head being hold in the hands of a therapist, massaging her neck/the back of her head].

On this photo it seems to be done really gentle, but that wasn’t how my ‘massage’ went. I also didn’t lie with my head on the bed.

Everything went well, so I’m glad my fellow Hippo decided it was better that he joined me this time (it was a surprise for him too). Friday I have my next appointment (then it has been two weeks ago). My fellow Hippo and I already decided that he would come then too. The therapist doesn’t mind it, so that’s nice (he seems to enjoy talking with my fellow Hippo actually). I hope I can ask him what his plans are for the therapy, so I can prepare myself better and hopefully not burden my fellow Hippo, but go with someone who gets paid for it. I also think this therapist might be a good ‘normal’ physiotherapist for me, since he seems to know a lot about fibromyalgia.

Photo source

My experience with orofacial (myofunctional) therapy (so far) – part 1 (my referral/introduction)

This is part 1, you can find part 2 and part 3 here.

Orofacial therapy, or as I’d like to call it ‘jaw-physiotherapy’. Before a couple months ago, I never heard about it. Untill I switched from dentist (because I moved to a different city) and she adviced me to do this therapy.

For many years I’ve been having problems with bruxism, a.k.a. grinding my teeth. It wakes my fellow Hippo up, it damages my teeth and it hurts my jaws.
As you can probably guess, going to the dentist isn’t my favourite pastime, if I put it lightly. I’m actually really scared and it feels like I’m getting more scared over the years. However, I do go about twice a year (the last time with thanks to my fellow Hippo). Because I was for the first time here, I got a long appointment. My previous dentist also knew about my bruxism and gave me an occlusal splint (that doesn’t fit well hurts and even changes the positions of my upper teeth – which is something that shouldn’t happen, because now I can’t put my teeth together during daytime. But my previous dentist wouldn’t make me a new one). I told the new dentist about it (once again with thanks to my fellow Hippo) and that I keep on grinding my teeth. A lot of people stop grinding when they get the splint. She told me that they can make an occlusal splint of different material, softer so it wouldn’t hurt, and she told me about this therapy. I haven’t made a new occlusal splint yet because of the money, but I did start with the therapy.

Not many physiotherapists are specialised in this, so I didn’t have much choice. Actually, just one. A man. I’m afraid of men and if possible, I ask for a female. After a lot of talking with my fellow Hippo, we decided we would try it and tell the therapist right away that I have PTSD too (we actually don’t remember if we did). My fellow Hippo would come with me – at least the first time. He actually always comes with me, but it’s too much for him to handle all my appointments, because he has mental and physical illnesses too. So we’re working on it that I do more with one of my ‘official guides’ or alone.

I always get afraid when I have to start a new treatment or get an examination, so first I always try to find as much information as possible. However, I could hardly find any experiences with this therapy. I’ve been 2 times so far, because of a long gap between my intake and my second appointment (too busy with other appointments).

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[Photo of one side of a skull with some fake muscles on it, with their names written on it as well]

My posts are often very long and I realize that that’s harder to read for a lot of people. So, I decided to split my posts up if I want to tell a lot (which is usually the case). Hopefully, it will be easier to read that way. So next time, I’ll talk about my first two appointments.

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