Rollercoaster

Dear specialists of all my fabulous diseases,

My life has been quite a roller-coaster the past weeks, so in this blog I would like to express myself and share what I have learned.

The problem started 5 years ago when I developed pain in my chest and I was given anti blood clotting medication by my GP. Then, the cardiologist told me to stop it because, according to her, my heart was healthy and it was because of the stress of losing my brother. I stopped and a week later on my way to London for holidays I got a heart attack at Antwerp station on 3 August 2015. In the Hospital in Antwerp they did a lot exams and told me it was caused by a blood clot. So they put me back on medication and the pain in my chest was gone. I lived without fear of having a heart attack. 

Last year during the summer of 2019 I started having heavy menstruation and it went on for 3 weeks non-stop. I even collapsed during a flight back from holidays and ended up at the emergency room at Schiphol. A place where by the way I was mistreated by the medical staff the moment I told them my HIV status. They accused me of putting in danger other people’s life in the plane because of my bleeding and I was supposed to stay away from travel until it was over.

But the bleeding simply did not stop, so I went to my own hospital where I was told I had a fibroid in my uterus. Keeping me on the same medication I continued bleeding heavily every month. But at some stage I lacked so much blood that I ended  up in hospital for a blood transfusion at the beginning of 2020. Still, no changes to my medication.

Then, in March this year I visited my cardiologist and he told me that I didn’t need to visit anymore for regular check-ups, only to see the GP four times a year to check my blood pressure. He sent a letter to my GP with an updated medication list, including the anti blood clotting medication. By then I already told my gynaecologist my family history of my two sisters who had the same problem. She told me that if the bleeding did not stop, that my last option, after trying a new anti-conception called mirena, they would consider removing my uterus. My heavy bleeding never stopped since it started so it became a chronic problem to me. And so I survived through most of the summer.

Three weeks ago is where the communication problem seriously started. As the bleeding continued, I was now anxious to hear the gynaecologist’s plan to solve my bleeding problem. Knowing what she told me before about removing my uterus, I was in shock when she said ”Madam, there is no need to remove your uterus now that Mirena does not work with you, and you can stop the anti blood clotting medication. After that we will see how things will be going without those two“.

I was in shock to hear I had to stop my anti blood clotting medication. I immediately recalled what happened 5 years ago. So I asked why should I stop it and she said that she had a discussion with the cardiologist and they concluded that I never really needed it. To me it was so tough to hear from the gynaecologist to tell me to stop medication that I have taken for so long. To me, this seemed just for the purpose of solving my bleeding without really considering my complicated story of heart failure and family history.

And since she informed me at the end of a Friday afternoon there was nothing I could do anymore but to stop the medication at that moment. So you can imagine how scary this idea was for the whole weekend. Meanwhile my pain was killing me and I could not wait to call my GP on the next Monday. And here came another surprise… My GP was not informed by the hospital for me to stop the anti blood clotting medication, she did not receive any update from the cardiologist or gynaecologist at all. So there was no way for her to tell if it was good or not and she advised me to call the cardiologist for him to explain.

So now I tried to reach the hospital to speak to my cardiologist. They said this was not possible as he was on a holiday, so they gave me an appointment for a telephone consultation for 2 weeks later. Can you imagine? Me having urgent questions about why my heart medication was stopped and having to wait for so long? I was angry, felt stressful and had panic attacks in the night. My pain was unbearable. So desperately I approached my pharmacist and she called the hospital to find out how long I would stop. The answer she got was the same, “Stop it, she never needed it”. To me I could not understand why the cardiologist never told me himself in march this year when I visited him, and suddenly my gynaecologist  is taking charge of these two diseases?

So, the last 3 weeks I have been calling medical professionals every single day; Two specialists, my GP, and my pharmacist. So often I could not reach them and they would promise to call me back. I was always holding my phone in my hands as I feared missing a call. And so often they didn’t call back at all on the date agreed. Every day I have been crying, scared in the night, and I don’t trust myself anymore when it comes to living my life…

So, where do I stand right now? By now I learned from the cardiologist that the gynaecologist urged him to stop my medication, but that he would have preferred me to stay on the medication to reduce the risk of a heart attack if there were no problems with my bleeding. Meanwhile, the gynaecologist still does not have an alternative, and told me that I have to make a very strong case (myself!) for her to take out my uterus. So I still don’t know what is going to happen.

Dear specialists, I know that each of you is doing a good job for the benefit of your patients. But I would like to ask you to communicate better between yourselves and do so on time. And please keep my GP informed at all times! More importantly, you are dealing with a human being, so make sure you explain very clearly what is going on. And  please listen to the concerns of a patient without ignoring  his or her family history. The pain I went (and still am going) through I do not wish to any other patient.

Together we are strong! Work together for the sake of a patient with multiple diseases.

Thank you

Peace ,

Eliane

(C)overt discrimation?

As an African woman, having a white Dutch husband and mixed kids, I want to share my experience towards Black Lives Matter. In 13 years in the Netherlands, I have come across many facets of discrimination. I mostly talk about issues relation to HIV stigma and discrimination, but today I choose to share this experience.

Not so long ago, I used to take my youngest child to school by bicycle. Crossing a busy road for a young child is dangerous so I would put him in my transport bike and bring him to school myself. Like many other parents I would use a narrow path as a shortcut to school with our bikes. Along this path, people from the neighbourhood would also be walking their dogs.

I had already been using this path for many years when suddenly a woman, walking her dog, told me I am not allowed to pass. But a white mother, also with a child on her bike, just passed and the woman said nothing at all. So I asked “why am I not allowed to pass?” She said “because this is a walking path”. I replied, “Well ,we are both breaking the rules as dogs are also not allowed to walk freely and shit here”. She was furious.

The next day, she stopped me and said she was going to report me to the police. I told her very calmly ”Look around, if you are going to call the police, make sure you clean up the dogshit, because I will tell them it is from your dog”. She said that she pays taxes to have a dog (forgetting that she should still clean up his shit), so I told her that I too pay taxes to use the path and I will tell the police to ask her how to explain the tons of dog shit along the path. I reminded her “Don’t be confused, I am Dutch and I know the rules and I am not afraid to talk with police”.

Two weeks later, she confronted me again, now with an old man. He said “You never went to school, you cannot read the sign. You are not allowed to use this path”. I replied that I can perfectly read the sign and that it says that you can walk here and that when walking with a bike in my hands, I am not breaking the rules. But that I know that a dog needs to be on a leash and that his shit needs to be cleaned. So I challenged them on who is breaking the Law right now? He was not happy with my answer and clearly did not expect me to stand up!

A week later, they were again both waiting for me and now blocked my passage. I thought that they would just let me pass. The old man said “You again? You are not allowed to pass here”. I asked why and made it clear that I am not going to use any other road. The old man then yelled at me “Houd je bek zwartkop (Shut your mouth, blackhead)”. Then he pushed me to the ground which made me almost fall into the stream along the path. When I got up I grabbed him by his shirt and looked into his eyes, and all I could read was his hatred for black people. And I already had done my research! Two white mothers, using the same path, never heard anything from those two, but one other black woman had exactly the same experience as me. 

When the police choose to believe their white citizens… 

I called my husband to tell him I was going to report these people to the police, so I took my passport and went to the police station. Guess who I saw coming out of the police station? The same woman who pushed me, she went to report me to the police. I became curious of what she could possibly have told the police as I had not committed any crime.

So after telling my story, the police officer told me “I don’t believe your story, you are the criminal”. I asked “why? what did I do?” He said “you had a knife and you were threatening this woman who you are reporting now. We know everything and stop acting like you are the victim!” I could not believe how I had transformed from a friendly mother being threatened and pushed to a criminal. I told the police that I have a witness, and that another dark mother had been experiencing exactly the same. The police send me away, and told me that my accusation had no value. So, the next day the other mother and I went to report our case again and the police responded that they will investigate.

Meanwhile my husband helped me to make complaint online through the anti-discrimination agency. Next thing I got was a visit from an anti-discrimination officer, offering me counselling as a victim. I told them that I don’t need counselling, I need Justice.

Then one day, a police officer showed up at my home. He told me that I should meet the old man, share a cup of tea at his home and talk about it. Why the hell would I share a cup of tea with a man full of hate, in his house? What would the police do if he pulled a gun and finish me in no time? And why would I go to his house, and why would he not come to my house? The police officer replied that he may feel comfortable in his own house. I said maybe he has a hidden agenda to kill me in his home and tell you that I attacked him. The police officer then said that he would check with him to meet in a neutral place. I said that I would only do that if the police officer would be available to look after me.

While waiting for the police officer to come back with a solution, they surprised me again by showing how much protective they are towards their white citizens. He came with an instruction for me to use another way to bring my child to school or wait to use that path until they are done walking their dogs. I looked the officer into his eyes and said “Listen, for a very long time now, they harass me and the other black woman, and they allow white mothers to keep using this same path. I am not going to change my route because you want to protect those people and their dogs. I want you to go back and tell those people that next time they see me to run. I will not tolerate them bullying me since you police fail to protect me and choose their side. If all mothers are going to stop using that path, I will stop, but if it’s only me who needs to change, no way. If they ever come close to me I will punish them myself and then you will come to take me to jail as a real criminal. Just tell them to wait until I have passed or go walk their dog in other place. Don’t come back again to ask to talk with them, I will teach them myself how to respect me.”

The next day I went to school on that same path, and when the woman saw me she immediately ran into another direction. My son noticed and said “Mom, she is now afraid of you, why?”. Well, I guess the police did at least one thing right! So now this woman knows that I am not a joker when it comes to discrimination, and the old man? He never dared to look into my eyes again.

Up to today, those white people got away with their violent and discriminatory behaviour. And I am still wondering why the police so openly chose the white people’s side and chose not to believe my side of the story. Did the police really expect me to keep my mouth shut like I was told by those white people? No! Because Black Lives matter everywhere!

Peace, Eliane