50 → The Netherlands → Wife, Admin Assistant & Activist → OCD → Therapy, CBT, ERP, Medication.
R: Hi Ineke.
I: Hi! Do you speak English or Dutch?
R: English, please!
I: No problem.
R: So, Ineke, who are you?
I: My name is Ineke, I am 50, I live with my husband and we have a dog called Freddy.
R: Where do you live?
I: In the Haaksbergen, in the east of Holland. In the neighbourhood of Enschede.
R: Do you work?
I: I work as a volunteer for Dwang.eu, a charity established to raise awareness for OCD for professionals, patients, families and friends and relations of people with the disorder.
“I was sick for 2 years and the company said it was ‘better’ for me to go.”
I worked for 18 years as a secretary for an accountancy firm. But at the age of 35 my contract was finished because of my OCD.
R: Was it their choice to go, or yours?
I: I was 2 years on sick leave and the company said it was ‘better’ for me to go. I was very sad, afterwards it turned out well for me as the stress and the deadlines made my OCD worse. Now, when I do my volunteer work, my OCD is stable and that is much better.
R: Did you study?
I: I did an education for nursing Alzheimer patients, level 1 and 2. But when my husband, who has also OCD fell down I had to quit my study for level 3 of this education. My age was by then was 49 and I thought, It’s enough! So I do as much volunteer work as possible and my husband has his own business, and I do administration for him
R: How long have you had OCD for?
I: When I was 16, I had anorexia. In those years, the late 80’s, there was no therapy for anorexia in Holland. You didn’t get sent to a therapist or psychologist, instead the doctor sent me to a gynaecologist. Following a dietician’s advice, the gynaecologist got me eating again. Then Control OCD (Obsessed With Control OCD) followed. Since the age of 18 the OCD became worse and worse.
“Confirmation OCD is constant questioning if I do things right – do you love me? are you angry with me? did I do it right?”
R: So you only have Control OCD?
I: I also have cleaning OCD and confirmation OCD – cleaning: keeping the household constantly clean and confirmation is constant questioning if I do things right – do you love me? are you angry with me? did I do it right?
R: Have you have OCD all your life?
I: Yes, I think as a look back. For example; As a child I asked my mother every night at about 18.30: “may I go to bed now?” I think I was the only child who would ask that. Rest, for me is a need, without enough sleep my symptoms get worse.
I was also very anxious as a child and in my youth. My father arranged everything for me.
R: What affect did it have on your daily life?
I: From 18-35 this got really bad. When I was 35 all I could do is lay in bed. Everything you can imagine was controlled by OCD. At 35 it led to deep depression.
I got sent to an outpatient department in the UMC Utrecht hospital, that was specialises in OCD. And then, for the first time in my whole experience, I was diagnosed with OCD! I had never heard that I had OCD before. The expertise is now in the AMC Amsterdam hospital
R: What did they diagnose it as earlier?
I: Prior to this, everyone I had seen told me I had a burn out. They had never seen symptoms like mine, and made me feel like I thought I was the only one in the world who has these symptoms. I went to therapy three times, I thought I always had a burn out. I never was diagnosed with OCD, it was never mentioned.
“I was in hospital for 7 months. For 3 months I was clinical – I had to be there day and night.”
R: How long were you in the hospital?
I: I was in hospital for 7 months. For 3 months I was clinical – I had to be there day and night. Only on the weekends I got to go home. For the other 4 months, it was part time. Then I was put on a a Fallback Prevention Plan, which is what we have in Holland to make sure you don’t regress. You can refer to the protocols to ensure you don’t make any moves that could lead to a fall back.
And that’s my OCD story.
— Ineke van Rijnbach (@IvanRijnbach) February 7, 2015
R: So your symptoms are?
I: I have the need to check. But I know if I do check, I will repeat many, many times. I can bear it, but I must live a stable life by making a week plan and a day plan. I rest every afternoon for 2.5 hours because my brain gets full. After 2.5 hours, I can complete the rest of the day without OCD symptoms.
R: Who initiated the resting? A doctor or yourself?
I: In the clinic you find these sort of options out for yourself. You have the possibility to receive OCD treatment. For me, I was the sort of person that has symptoms all day long. And they said to me “Ineke’ go to rest in the afternoon’ and I said ‘yeah, I can’t sleep because my mind is constantly upset’
R: Your mind is racing. That happens to me too.
I: Yes, and they said listen to the radio. So I set my radio next to me, I only listen to news and real life stations, and that appeared to be good for me. I felt comfortable because my thoughts were gone for a while and I can sleep. And now I have sleep every afternoon for 2,5 hours, for 16 years. When I don’t sleep for one day it’s ok. Two days more and my OCD gets worse, the symptoms come back.
R: When you wake in the afternoon do you feel a lot better?
I: Yes, I can go on, I can do my hobbies, invite people over, visit people, do an interview, work again. My life is 10 hours sleep per day – 7.5 in the night and 2.5 in the day. 14 hours to do things!
R: That’s a good balance.
I: It goes great for 16 years!
R: Did you go to therapy?
I: In the UMC Utrecht hospital I got CBT (Cognitive Behavioural Therapy) and ERP (Exposure and Response Prevention)
R: Have you done both of those?
I: Yes, and also PMT (Psychomotor therapy) and Creative Therapy. It was group therapy and lasted all day, like a school day. At the end of the treatment the assistant therapist came over to my house and we practiced the ERP at home to reduce my OCD.
R: What they offer to help?
I: They set me little goals to practice. For example: I check a subject 16 times for 45 minutes at first. They help me reduce the number and the period of time. I have reduced the checking to between 0 and 2 times when I have a bad day.
R: Do you take medication?
I: Yes anti-depressants – Seroxat. UMC has prescribed 60mg, the maximum per day and it works well to reduce my OCD.
R: It helps?
I: For me yes. For everyone it is different.
R: 10 years ago I was on Zoloft, 50mg per day. It kinda worked for me, but it wasn’t strong enough and I didn’t want to go higher. It did make my teeth grind though. Do you have any side effects?
I: Yes. For example, my weight increased. 30kg in 7 months.
R: Were you ok with that?
I: With a dietician I worked to lose it. We got it down, but in the end, it’s ok with me, I feel better. Also, I am very tired. The tiredness was there before medication, but now it is more.
R: Do you have any doctors or specialists in Holland that have helped you that you can recommend?
R: If you could go back, would you change anything?
I: At the age of 16, even though there was no therapy at that time, I would have seen a specialised therapist.
My name is changed because we are married 28 september 2015 pic.twitter.com/X0Wd1VPE0K
— Ineke van Rijnbach (@IvanRijnbach) October 8, 2015
R: This fact I love: tell me how you fell in love through OCD?
I: After I was discharged from hospital I had no friends of my own because of the length of the OCD treatment. The hospital recommended I get a computer and go online to make friends. To build a bigger network. So, I bought a PC, and found an OCD forum, became a member and started chatting. I was talking with a forum member called Jan for 3 years, we talked about things on the forum, we exchanged emails for 3 years. There was no meeting, yet we discussed everything together. We weren’t looking for anything, we had both had relations before and it was ok just writing to each other. But after 3 years we decided to plan a date.
R: And it went well!?
I: It went well, because we knew everything about each other! And we spoke about recommendations, and asked advice on what to do in certain situations, and so on.
R: And now you’re married?
I: Yes, in September 2015! 12.5 years together.
R: Great story!
I: And in the dwang.eu OCD Facebook group: NL/B, and the OCD Forum, I know 3 more couples who have met, both have OCD and have a relationship, got married or had a child.
R: That is really cool!
R: What are your plans for OCD?
I: To stay stable. Keep the daily exercises going. Keep the head clear with good daily and weekly planning. And to help other people and raise awareness through dwang.eu – and to raise awareness by writing blogs. For Dwang.eu I am the moderator for the social media, assist the admin, and I am a contact person for fellow sufferers for support by e-mail. I can also be asked to speak at schools or universities. I also am a group leader of a support Group for the Angst, Dwang en Fobie stichting. My email address for people who contacted me to ask for support is: Ineke@dwang.eu
R: Do they contact you often?
I: Not so often, but the chat groups go very well.
R: Thank you very much for the call Ineke.
I: You too, have a great day!