Anna Suchecka, the author of the blog “Wife with ADHD”, found out that she suffers from endometriosis at the age of 21. He has been struggling with the disease since 17. During this time, she heard not only from her relatives, but also from complete strangers, that she was lazy, that she was pretending and that it was impossible, that she hurt so much that she could not go to work. Today, after years of fighting the disease, Ania is pregnant with twins. She tells us about the hate that has been poured out on her on the Internet and in real life, as well as about the action # sickness niewidać.
- Anna has endometriosis, a chronic disease characterized by the fact that the tissues that line the uterus are outside the womb
- Endometriosis causes severe pain, heavy menstruation, and painful intercourse. It can cause problems with getting pregnant
- «I was a wreck of a man. I lay there for days and it hurt all the time »- says the woman
- You can find more such stories on the TvoiLokony home page
As part of our campaign “We choose the truth”, we recall selected texts from TvoiLokona that influenced the reality around us. In the coming months, more articles from the series will be presented on the TvoiLokony home page. This text originally appeared on Onet in November 2019.
Magda Zmna, MedTvoiLokony: What is it like to live with a disease you can’t see?
Anna Suchecka: That’s a good question. Recently, I had a memory from 2016 displayed on Facebook. Me, in a sensational dress, beautifully made-up, with wonderfully arranged hair … I looked really great. Under the photo, comments from friends, nothing but delight. Among them was one that I wrote: “and think that I was in a terrible state then”. It was totally invisible. In answering the question – it is like that every day you hit your head against the wall. He suffers physically and mentally and at the same time does not show it. Sometimes there will be a distorted face, showing tiredness, a grimace on the face.
Showing weakness is not easy.
Exactly. We women have something about us that we don’t want to show our weaker side. Especially if we are sick for years, it is impossible to walk around with a distorted face all the time so that the whole environment can see how bad we are. Sooner or later there comes a point that we don’t want to be shown. Sometimes it is very difficult, and sometimes it fails at all.
We put on a mask and learn to hide our feelings?
Or we hide the disease forever, we don’t talk about it at all and we live in great secret. It is the aftermath of the fact that we face criticism with any approach to the subject of the disease, which may seem strange in endometriosis. It is a common disease. The data shows that 1 in 10 women suffer from the disease, and some even say 1 in 5. When I started talking about it out loud a few years ago, it turned out that there are more people like me. More women get sick. I started talking about my disease under pressure from my family and friends. There was a moment when I didn’t work for two years. I was a wreck of a man. I lay there for days and it hurt all the time. Then there were comments from close and distant friends. I heard that I am lazy, that I prey on my husband, that he will take away … so that I can lie down and smell. Then I started talking out loud about the disease.
See also: Is it endometriosis? The gynecologist suggests
Not only in real life, but also on the Internet?
I have been running a blog for several years. At first, I would sometimes smuggle a sentence or two that I was sick, but I tried not to speak out loud about it. I actually started writing about it three years ago. There was a moment when someone important in my family called me and, shaking with emotion, asked what am I doing? How can I write such nonsense on the internet. Apparently all my friends in the countryside read this and laugh at me. Such comments were the order of the day. There were also questions about when we will finally have a second child with my husband.
It is estimated that endometriosis affects 300 million women worldwide. In Poland, up to 2 million women struggle with the disease. Diagnosing the disease takes up to 8-10 years.
Was that what interested them the most?
Yes it is. If you don’t have children, they ask when it will be the first, if you have one, they ask when the second will be. At first, I was evasive because in the end it should only be mine and my husband’s business, but then I began to openly say that I was sick and I could not get pregnant. I don’t know if we will have any more children. At that time, I also heard that I was exaggerating, that I do not see the disease and it is certainly not as bad as I present it. The biggest stroke of hate came when I started collecting money for my endometriosis surgery abroad.
What happened then?
Let’s start with the fact that I found out that I was ill quite early. I was 21 years old. For years, I went from doctor to doctor, took prescribed medications, and did whatever the doctors told me to. I gave birth to a daughter. There was a moment when I heard that this unbelievable pain accompanying me is because I am a woman and it must be so. At that point, I hated being a woman. I also heard that if I get pregnant and have a baby, it will go away. It did not pass, and it even got worse. I did not respond to treatment, endometriosis continued to grow, and it continued to occupy more tissues. After a few years, I found myself on the operating table again and it turned out that there was a massacre. I asked the doctor how it happened, I was undergoing treatment, I was an urgent patient, I used hormones. The doctor said, I took it. By what miracle? After all, it was supposed to improve. Do you know what the doctor said? “I don’t know, child.”
Then who is to know?
There was such an awkward silence here. The doctor also said something like this: I can prescribe you another hormone like that, you can take it. He said it without conviction, I had the feeling he wanted me to leave him. I didn’t even take that prescription. When I came back from the hospital, I cried all the way. On the one hand, I felt left to myself, and on the other hand, after this conversation, I felt that my gate was open and I had to do something myself. I was so confused then. Then I started to heal myself holistically, introduced a diet, looked for help for myself.
It is estimated that 30-50 percent. women suffering from endometriosis are infertile. In the later stages of the disease, infertility results, among others, from from anatomical disorders of the smaller pelvis, adhesions, cysts on the ovaries, dysfunction of the fallopian tubes.
And this is how you came across a clinic in Dortmund?
Every doctor I visited in Poland wanted to operate on me. But when I started asking questions, how did I find out if and how they would remove all endometriosis, it turned out that these surgeries would not help me in the long run. I’ve had a lot of research done. One doctor examined a tumor on the bladder, another said it was not there at all. I have this tumor or not? In August 2018, I got the MRI results, I had in black and white that the tumor was there. At that time, I already knew about the clinic in Dortmund, that they could operate on me there and cut out all the outbreaks. It was a very expensive operation, so I decided to set up a fundraiser on one of the portals intended for this purpose. It was the most difficult decision of my life. I didn’t expect such hate to be poured out on me.
Hejt? Because you decided to fight for your health?
First of all, I was one of the few who set up a fundraiser for the treatment of endometriosis. Now there are many more of these fundraisers, and this is also due to the fact that I started and wrote about it on social media. On the one hand, huge support and help, money was collected. On the other hand, a lot of hate and criticism. I read that when you can collect for something like this, it is not a fatal disease, you can live with it, you can treat it at the National Health Fund. I tried to prove that I needed this treatment, I provided medical documentation. I uploaded photos to show people what women with endometriosis look like when nobody can see them. Rolled up under a blanket, with a hot water bottle on her stomach. I was uploading pictures of my stomach showing how big the tumor is. I had to prove that I did not dim. The worst thing was when the information about my fundraiser was made available by the local media. Then I read that if I could afford a house near the forest, how dare I reach out for money from strangers. I could have thought before. Honestly? After that, I was afraid to walk around the city, I felt hunted.
Not only were you not very sick, but also not poor enough?
Exactly. After all, there are people who are worse off, who suffer more and need help more. And it’s possible to live with endometriosis. Yes, but if it affects the intestines, it can be life-threatening. And then it gets not very interesting. Many times it happened that I wanted to delete my blog, stop contributing to the fanpage. But then I always got a message from someone my writing helps. Various women wrote to me that thanks to what they read in me, they have the strength to fight for their health.
It is for them that the action # sickness niewidać?
The action was created spontaneously. I participate in various groups and forums that associate women with endometriosis. Unfortunately, among the sick, it often happens that they are bidding on who is worse off. I met with hatred, incl. because I post photos on my fanpage that look nice. After all, it is impossible for me to suffer so much when you cannot see it. Just because I don’t have the disease on my face doesn’t mean I don’t get sick. I finally cracked. I asked if I should write on my forehead that I am ill? Should I stand in the middle of the street and hold a banner over my head that I am sick? Then it will be seen and everyone will believe me? Because you can translate once or twice, but when someone drills a hole in the stomach, questions or asks, we can’t do it anymore. And in the end, I did not manage either. I took a crayon and literally wrote on my forehead that I was sick, and then I posted a photo on the internet with the hashtag #chorobyniewidac. The response was amazing.
Women with endometriosis responded to the hashtag?
Not only. Because not only endometriosis is not visible. Hashimoto’s disease, diabetes and other ailments are also absent. I know mothers of children with cystic fibrosis who hear that their children do not show the disease. Among the people who joined the action were girls suffering from depression, Hashimoto’s and others. You can’t see them either. In our society, sick people are generally a problem. They often hear: don’t get cold, don’t whine, don’t be like that, don’t show.
Others have it worse.
There will always be someone worse off. And hence this action came about and it was very much needed. I received a lot of messages from women who wrote that the action had opened the eyes of their loved ones. There was also a lot of messages like: after I found out about the disease, he shows my relatives your side. And I say: see husband / partner / mom, the chick on the Internet also has it. There is such a disease. And then this loved one comes to my website, reads and begins to understand what the sick person is struggling with and it is easier for him to support him. Thanks to the fact that I write about my illness, how I heal myself and what helps me, I get messages from other women that it has helped them.
What’s the news?
For example, you write to me that thanks to me you changed your diet and you feel better. Or I get a message from a lady who is at the clinic in Dortmund and a patient is lying next to her saying that she is here thanks to me. Because for 20 years she didn’t know what was wrong with her, she fought for her health, found my blog and started effective treatment. It is really very uplifting and will give you strength to keep fighting. It balances and even prevails this hate. Because hate doesn’t disappear, only things that are hated change.
Women struggling with endometriosis are XNUMX times more likely to suffer from mental disorders. They are often associated with depression and anxiety.
As?
Before I decided to have an operation in Dortmund, I thoroughly discussed the whole plan with my doctor. I asked, among others about whether I will be able to have a child. Women with endometriosis have a very small chance of getting pregnant, and I additionally had one fallopian tube removed. The doctor said that as long as I have a uterus, ovary, and fallopian tube, the chances of getting pregnant are. Ideally, I should get pregnant within three months after surgery. It did not work and I practically accepted that we will not have any more children with my husband. Until here, after eight months, it turned out that I was pregnant. WITH TWINS. So far I’m in shock, and it’s been three and a half months since I know it (laughs). Unfortunately, my pregnancy turned out to be problematic. Within three months, I visited three gynecologists. Two of them said that there were no gynecologists in my town who would decide to conduct multiple pregnancies and I should seek a doctor in Białystok, preferably in Warsaw. In Białystok, I made an appointment with the professor who was admitting my daughter to the world.
Unfortunately, I was at the consultation twice and the doctor replaced the professor twice. The first time everything was ok, the second time I visited, I heard: oh no, it’s the twins again. And all because I asked about the birth during my first visit. Twins can be born naturally, but it is often the case that a caesarean section is needed. With endometriosis, there is a risk that endometriosis will spread to the scar during a cesarean. I wanted to know how to prevent it, but you were not eager to talk to me. Last week I was in Dortmund for a consultation with the doctor who operated on me. Now I know everything. I also share this knowledge on my blog, and recently I also give interviews. This is news to me. One of them, concerning i.a. hate, I gave my husband to read.
What he said?
He stated that I had said nothing that he didn’t know. He then admitted that he, too, was dealing with the hate caused by my illness. He heard that his wife is lazy, she sits at home instead of working, uploads photos to the internet and pretends to be sick. He kept the hate who hit him to himself. He didn’t tell me about it. They hit him more directly. It was terrible too. Fortunately, my husband is a support for me. Only he knows how many crises we have had because of my illness. However, we managed to survive it.
How are you now?
I am recovering from the news that we are expecting twins (laughs). I am slowly getting used to it. For a long time I thought that I would not be able to have children. I rest and watch my belly grow at an alarming rate. I know that with endometriosis it is not easy to get pregnant and many women hear that it is impossible. And in many cases it really can’t. But as my doctor said, as long as we have a uterus and at least one working ovary and fallopian tube, there is a chance. Which I am the best example of.
The editorial board recommends:
- Why is endometriosis not to be underestimated? Interview with gynecologist Dr. Tomasz Rokicki
- Endometriosis took everything away from me. It’s a life of endless pain
- Endometriosis – an insidious disease that cannot be seen. It attacks young women, most often thin ones
For a long time you have not been able to find the cause of your ailments or are you still looking for it? Do you want to tell us your story or draw attention to a common health problem? Write to the address [email protected] #Together we can do more
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