At just 21 years old, Núria Jordà was detected with a tumor in her left carotid. After a delicate 6-hour operation to remove it, she woke up with a bypass in her leg and a diagnosis of dysphagia, a swallowing disorder that prevents solid foods from being swallowed correctly and that affects more than 2.5 million Spaniards. “A bypass and dysphagia changed my life, but they didn’t put an end to my desire to live it,” says Jordà. She had to learn again to drink water, eat (only crushed swallows), brush her teeth… And, above all, to draw strength from where she thought she didn’t have it.
Now he shares his story on TikTok, where he has more than 600,000 followers. We chatted with her on World Dysphagia Day to learn about her story and talk about In the end, the only thing that happens is that everything happens, a book in which she explains how she has managed to get out of the loop of frustration that this pathology brought her and the who has drawn the lesson that everything is temporary: “Although it seems like an empty cliché,” he reflects.
How do you face the diagnosis of dysphagia at only 21 years old?
That moment was a trauma, a total shock. The operation was two hours and ended up lasting six because there were complications. I woke up on a stretcher in a white room and I didn’t even know how much time had passed. I thought, “Am I in heaven?” (laughs). I didn’t have anyone there, my family wasn’t there. There was only one nurse who told me: “Honey, it’s all over now.” I saw that a tube was coming out of my neck and that I had a huge scar on my leg. When they told me she had mixed dysphagia and wouldn’t be able to drink solids or liquids, I remember asking if it was a joke. Plus, I had no idea what dysphagia was. Especially at first I was very afraid because I would choke on anything.
When you have dysphagia some parts of your routine become challenging. What day-to-day things did you have to learn to do again?
Gulp. We don’t realize it, but we do it all the time. The first time I brushed my teeth I choked. It also happens to me in the pool and in the shower, where I always act silly a lot. The first time I got water in my mouth and I choked too. These are things that I had never consciously thought about and now I think: “I should have appreciated the times I could swallow saliva” (laughs).
How did this process affect you mentally?
What was most difficult for me was thinking: “How can it be that for 20 years of my life I could do all these things normally and now my head doesn’t know how to do them?” Because I remember what it was like to swallow. At first it made me very angry. I entered a loop of constant frustration and thought: “I will never be able to eat a slice of pizza again.”
What is daily life like for a person with dysphagia?
Living with dysphagia means living your life through it. For example, this morning I woke up because I was choking on saliva. And the rest of the day is the same… It is a pathology that is present all the time. Your best allies are mixers and thickeners, powders that you put in any liquid and make it drinkable, from water to alcoholic beverages (laughs). With the rest of the food, what I have to do is blend it with a blender. Although I had to get the hang of it, because especially at the beginning there were bumps and bits that made me choke.
What would you say to someone who has just received a diagnosis of dysphagia?
It has always helped me a lot to think that everything was going to happen. It’s like when you have an exam and you want it to arrive so you don’t suffer anymore. It goes very badly. There are moments of very strong depression, but there comes a time when you see that you are making progress: you choke less than yesterday, you have been able to control your saliva more… I go to a neurological rehabilitation clinic where I work with a speech therapist. There is always a little progress, even if it is moving your tongue a little or being able to eat a different texture. When you are very bad you can always get better.
On social networks you show your progress: you explain the new foods and textures that you are incorporating. It is that “ray of hope” that you talk so much about in the book.
Exact! Even if it’s a small improvement, it’s an incredible change. When I see that I can eat a new food, it is a huge illusion. Do you know how nice it is to have something solid on your plate? I remember that the first time I had a fork and knife to eat, I cried. Oh my god, I haven’t worn them in like eight months! At first I only ate with a spoon and at that time I had no idea that I would be able to eat the things I can eat now. Seeing you progress is super nice. You have to trust the process and the professionals. You can’t do more.
In the book you say that it has been a very hard process of introspection and you explain things that have cost you a lot to share. What will readers find in this book?
The other day, a girl told me that the book was super pessimistic. I told him that the book is very sad and hard because I have not had an easy life. I have tried to tell the reality as it has been: the reality of a person who at 21 years old had to leave university and relearn how to do a thousand things… In the book there are very good moments, because I always have a super positive attitude, I am very happy and I laugh a lot, but I also have my bad days, because in the end it is very screwy to live with this. I wouldn’t want them to stay with the happy flower version of a pathology like that. That’s what you’re going to find: from my most incredible days where I managed to eat a new solid, to my shitty days of “I want euthanasia” (she laughs). It’s that contrast. But that’s life; there is nothing ideal.
You also talk about the importance of empathy among doctors.
Yes, it is a key part. I recently went with my speech therapist to a conference in Alicante and a surgeon came who spoke about the empathy that a surgeon should have when she has failed in an operation. She said: “You have to think about the person you operated on and how you left them, because in the end they are the ones who go home and suffer the consequences.” I cried while the surgeon told all this. It’s something that I haven’t healed yet: I felt totally abandoned by a person who had to come and tell me: “Look, this happened and I’m so sorry.” The rest of the surgeons who were in my operation came to tell me that they were very sorry, but this man did not come.
You explain that the paperwork with public health delayed your physical and mental rehabilitation for four months. What would you ask of public health in this regard?
More speech therapists. It is a key piece for rehabilitation. The paperwork and waiting lists make it take a long time and that made me waste a lot of time and have a very bad time. If a speech therapist had evaluated me on the first day, perhaps my tongue would not have suffered so much wear and tear nor would I have lost 20 kilos. I went home with many doubts, not knowing if it was going to be like this forever, and so on until they finally referred me. Now I’ve been going there for a year and eight months, but it’s not easy to get renewed either… Sometimes it costs a lot.
In difficult times like this, the support of those around you is essential.
At first I didn’t want to see anyone. She was too mentally exhausted to socialize. When my friends came over, I made an effort to sit in the chair, but after two minutes I couldn’t take it anymore. In the end, after I told them so much, they left, and that made the process much worse, because I was experiencing an illness without friends. I felt very alone. My parents set up my room in the living room, and when my mother saw me every morning, she would say to me: “Good morning, honey!”, and I would tell her: “I want to die.” I will apologize for this for the rest of my life, but I didn’t see the point in anything: I couldn’t get up to go to the bathroom or do anything… I saw that life went on and that I was stuck there. It is very hard, it is a duel that we have to go through. Until, in the end, calm comes when you accept everything.
The key is understanding and being present in some way…
Exact. My friends from university knew that I couldn’t answer on WhatsApp, but they still talked to me during the day so that I could see it when I picked up my phone. They explained to me what they did in class, they sent me photos… I would see it at night and say: “Oh, they remembered me.” He was super pretty.
The role of the rest of society can also be very important for the inclusion of people with dysphagia. You talk about restaurants with menus for people with dysphagia.
In the same way that someone with a wheelchair cannot access many restaurants, the same thing happens to me with dysphagia: I can go into the restaurant, but I sit down to eat and they don’t want to crush my food. What I have to do when that happens is eat baby food at the restaurant… It doesn’t cost anything to make a gesture so that I can eat. You can blend the food in a moment, as in a restaurant there will surely be a blender. I have also noticed some restaurants that have adapted because I am “Núria from TikTok”, but then we would have to see if they would do the same with someone who is not known.
Your first video about dysphagia on social networks, you uploaded it by mistake! But he had incredible support, 400,000 followers in a week. In the end, you decided to continue sharing content and now you have more than 600,000 followers.
Yeah! The first video had to be visible only to my friends and I accidentally posted it in public. But he had so much support that I uploaded another video where I talked about the problems I encountered when I went out to eat. People told me: “Why don’t you just grind your food in no time, it’s so easy?” I started answering questions and continue to this day. It’s very nice because there are people who are aware of any progress you make.