CW: descriptions of medical symptoms, fainting, medical gaslighting.
Today’s blog post is an interview with Hanna Pacula, one of the founding members of Fullabilities; a disability advocacy program run by disabled and chronically ill students from Poland. Hanna has an incredible story. She has been bed-bound and unable to achieve a seated position without fainting since 2018. She speaks candidly not only about how she has coped with the hurt and neglect she experienced in the medical system, but also about how she has grown through these challenges, and ultimately used them to help change the public perception of disability in Poland, with a view to improve the world’s accessibility for people with any type of physical or mental limitation.
I think you’ll find today’s post equal parts heartbreaking and healing. Grab a cup of your favourite soothing beverage, and get comfortable, because today is a long one!
(and when you’re done, be sure to check out my interview with Hanna’s colleagues Benedykt and Ola on the Fullabilities YouTube channel!)
Editorial disclaimer: All of the ideas expressed in this interview are Hanna’s own. However, with her permission, some of her responses have been edited for clarity, as English is not her first language.
J: Hi Hanna! Could you please start by telling us a little bit about yourself, your diagnosed conditions, and the mission of Fullabilities?
H: My name is Hanna Pacuła and I’m 16 years old. I live in my native Poland where I’m in my second year of high school. I’m interested in many things, but my main passions in life are music, science, people, and medicine.
I have Chung-Jansen Syndrome, caused by an ultra-rare PHIP gene mutation. There are around 200 cases world-wide, and I’m currently the only known case of this specific sub-type. I was also diagnosed with Hypermobile Ehlers-Danlos Syndrome (hEDS), Dysautonomia, major GI issues and possible Gastroparesis. It’s also very likely that I have other undiagnosed health problems, as I still suffer from an array of symptoms that don’t fit into this list.
I’ve been completely bedridden since October 2018. I literally haven’t been able to maintain consciousness in an upright position for over 3 years now. Every time someone tries to help me up, I lose consciousness and only regain it when being placed back down. I’m struggling with muscle and joint pain, migraines, bladder issues, reoccurring UTI’s and major gastrointestinal issues.
Last year, I started my Instagram account (@hanna_eds.and.co) to talk about my experiences and find a community of people where we could understand each other through our shared experiences. That was one of the best decisions I’ve ever made! I’ve met so many wonderful people and I have the chance to tell the world my story, documenting my ups and downs.
Fullabilities is my biggest achievement yet, and I’m very proud of what my teammates (Weronika, Benedykt, Ola, Iga and Ula) and I have done so far to raise awareness about disabilities and chronic/rare illnesses. We meet with children in primary schools and talk to them about disability. We post regularly on social media and conduct interviews with people who have had different experiences with illness and disability.
Our primary goal is to educate the public by showing them the perspective of people who deal with health issues on a daily basis. This enables us to break down stereotypes about people with disabilities and help bring an end to their stigmatisation. We also hope that our project will eventually help make the world a more accessible and welcoming place to people of all abilities.
J: Do you identify as chronically ill, disabled, or both? Was there a defining moment when you decided to start applying these labels to yourself?
H: I’ve never really put much thought into it. When I could still walk I’d say I’m “just” ill, but ever since I’ve been bedridden, there’s been no denying that I have a disability. I’ve experienced people looking at me weirdly when I describe myself as a disabled person, but I don’t think it’s a term I should avoid. It’s not a bad word, and that’s my reality for now. I’m proud to say I am a part of a disabled community. I wish people could see how wonderful our community really is when they hear that term.
I don’t really care much for labels, you can call me whatever you want, just be respectful.
J: I couldn’t agree more, I don’t mind what terminology people use for me or my conditions. The only thing I don’t like, is when people try to tell me what terms we should or shouldn’t be choosing for ourselves!
Something that you explain early on in your blog, is that while you finally have a diagnosis for many of your chronic symptoms, some of the puzzle pieces are still missing.
This is something I really struggled to come to terms with during my own teenage years, but in retrospect, I can see that my symptoms and experiences were just as valid then as they are now (with labels attached to them).
Can you tell me about how it makes you feel to still live that uncertainty? It is difficult for you to talk about still being partially undiagnosed?
H: At the beginning of my journey some doctors doubted whether or not my symptoms were real. I knew that they were real, but these experiences really knocked my confidence and there have been times when I’ve been scared to talk about my symptoms for fear of being gas lit again.
Now, after 6 years my reality is totally different, and I’m so happy I’ve finally been diagnosed. Prior to last year, the lack of diagnoses made it so much harder to be treated seriously by any medical professional. It’s sad that in order to be believed I had to have a piece of paper to confirm I’m not just making things up!
Having said that, I still have so many symptoms that are not explained by the usual clinical view of my diagnoses, but then again, one of my genetic conditions is so rare that most doctors don’t even know what it is. Maybe in 10-20 years time they’ll have a different view of which of my symptoms are linked to which diagnosis. However, my doctors still believe that there is something else that they are not seeing, and while it is frustrating to not know the answer, it wouldn’t change the course of treatment. At least for now, all they can do is try to provide me symptomatic relief, as my illnesses are incurable.
I’m the kind of person who loves to know things, and if I had nothing but time, I would learn about all kinds of random things and people, because that is what makes me most excited. So of course I wish I knew what the missing pieces of the puzzle were, but I’ve come to accept the fact that I may never know some of those answers, and I’m trying to make peace with that.
Undiagnosed symptoms are the ones that some doctors have the hardest time believing, but I’ve learned to advocate for myself and not waste time on those who choose not to listen. I just don’t have time or energy to waste on those people like that.
Even though it’s frustrating to not be fully diagnosed, I’m extremely lucky that through this new approach I’ve found the right doctors for me, and they are working their butts off to help me find the answers I need, including acknowledging and treating my undiagnosed symptoms.
J: You’re very self-aware about the fact that you have been gaslit by doctors multiple times in the past; even noting that you were once “threatened” with a lumbar puncture if you didn’t “stop pretending” (*throws up in own mouth*).
How has your mental health and self-image been affected by medical gaslighting and negligence?
H: When my health deteriorated in 2017 I was only 11 years old, and was already experiencing gaslighting and even abuse from the people that were there, supposedly, to help me. My young mind could not understand it. I wouldn’t say those people have impacted my self-image that much, because I’ve never really blamed that abuse on myself. I just felt sorry for the thousands of other patients being mistreated by them. I was angry at them for taking advantage of their position of power, and I thought they should lose their job for that.
However, I could never find the courage to stand up for myself in front of them. I just took it and never said a bad word. I’d been raised to respect my elders and not talk back.
Eventually, the continuous gaslighting also lead me to start gaslighting myself. If someone asked me if I wanted help, I’d say I could manage on my own, even though I was clearly battling huge things that no 11-year old should ever have to face. When nurses or ER doctors asked me how I’d rate my pain, I’d always give a lower number, otherwise I feared they would think I was exaggerating.
Since I have become bedridden because of my unusual symptoms, there have been at least four doctors who have actually seen me lose consciousness whilst being lifted upright but still said that it’s not possible because they’ve never seen something like it before. It’s like they feel entitled to dismiss my suffering because they can’t explain it. They’d even talk to me, ask questions, try to feed me even, while I was unconscious in front of my parents or other patients, because they didn’t believe I had truly passed out.
I have so many stories that we could be here for hours! But I think one of the most humiliating experiences a doctor put me through was placing me in a chair, and not allowing my mum to pick me up again when I fainted! I was not conscious most of the time but my mum told me that they just stared at me, waiting for me to miraculously get up by myself.
On another occasion, this same doctor directed my mum and me to go with a nurse to another room on the other side of the floor we were on. They were annoyed when I fainted within a second of being picked up multiple times along the way, even though they knew that I was fainting all the time in other situations! Patients, medical students and other doctors were also watching, which only added to my humiliation. I think those two incidents did have an impact on my mental health, but thankfully I was able to work through them and I don’t let those experiences hurt me anymore. However, I cannot forget them no matter how hard I’d try. Honestly, I think if I wanted to sue some of the doctors and hospitals involved I’d most likely win. However, my family and I don’t have the energy for a fight like that right now. I need to focus on myself and my wellbeing, and as cheesy as it sounds, those experiences did make me stronger and, ironically, made me more compassionate and empathetic.
J: Wow, thank you so much for your candour with that question. Some of those details are honestly quite sickening. I love that despite all the abuse you have faced from medical professionals, you can see how these experiences have made you more empathetic, and you continue to relentlessly advocate for yourself! I wish I had a role model like you growing up!
Do you have any tips for other teenagers who face the added stigma of being “too young to be sick” when seeking medical care?
H: Even though it’s easier said than done, try to learn how to not let anyone make you or your struggles seem smaller. When you hear “you’re too young to be sick,” educate respectfully. Stand up for yourself and do not let doctors dismiss you. Go in with the attitude that you won’t be going anywhere until you’ve been heard. Having said that, if you see that a doctor won’t budge, you do not have to waste your precious energy on them. Get out and find someone who will listen. I know it might seem impossible right now, but someone will show up in your life who’ll listen and who’ll do everything they can to help you. Don’t give up on yourself or on your need to feel better. It’s going to take time and a lot of courage and persistence, but someone will know someone who knows…someone, who will be the right fit.
There’s no such thing as “being too young to be sick”.
J: Another amazing answer! Actually, this is almost exactly what has happened to me on more than one occasion when I’ve been close to giving up. So I have to second your advice, always hold out for a doctor that is a good fit for you and is willing to do whatever it takes to help. They may seem rare, but they do exist!
Many young people have the idea that if you are sick, all you have to do is go to the doctor, and they will make you better. Mainstream media also portrays doctors as going above and beyond to help complex patients uncover the causes of their chronic symptoms, something which is very much at odds with the experiences you have detailed in your previous answers.
Does this cognitive dissonance makes it difficult for you to connect with people your own age? Do you feel that you can talk openly with your peers about this problem, or do you prefer to connect with people with whom you have shared experience?
H: I am the type of person who will connect with everyone. I can have a conversation about everything and, usually, I have a lot to say. I find it hard, however, to truly relate to most of my peers because their reality is much different to mine.
Their affairs are usually not mine, and my struggles are not familiar to them. If someone is willing to listen to my endless stories about my medical experiences, then I’m more than happy to share! But yes, most people who don’t have much experience with medical world think that getting a diagnosis and an appropriate treatment plan is just a matter of a few days, maybe a few weeks. Mainstream media and medical TV shows don’t help with that misconception, and unfortunately, when I first tell people about my experiences they often find them difficult to understand, and some even think I’m joking!
Communicating with someone from the disability community is easier, because I can relate to a lot more of what they have to say. They just get it. Exchanging our experiences and exchanging tips and tricks is so great and I always feel like I belong there. The abled world is my world too, but it is not suited for people like me. We have to fight harder to be seen and understood there.
I too used to buy into the false narrative the media portrayed when I was younger, and so finding out the truth so suddenly hit me like a ton of bricks! As much as I wish it was true ( – all those gorgeous doctors swanning around doing everything they can to help their patients and not being able to sleep at night when someone is still undiagnosed ) I think it’s important to have representation as to how the medical system is actually failing people like us, so that others won’t have to go through the same rude awakening.
J: So what do you wish healthy people knew about what it’s like to go through adolescence with a chronic condition?
H: I don’t think many people realise how hard it is to grieve a past life that’s been abruptly taken away from you without your consent or awareness, and how lonely it can be to see peers from your “past life” live their lives normally without you. Young minds have a disadvantage when it comes to saying goodbye like that, because it’s an extremely difficult concept to grasp, especially at the beginning.
You have to grieve your past as if it was the passing of a close relative, and it is very hard, but eventually you transition into what I call the “adjustment process.” You adjust your dreams, plans and life to what your body can or can’t do. At first, it’s easy to feel resentment, and maybe a pinch of jealousy whenever you see people your age out and about, but ultimately you come to accept that your life is “unique”.
After you adjust, you grieve for a little longer before you decide that carrying all that pain inside is not how you want to live your life. If, somehow, you’ve found the strength to chase your dreams despite all the obstacles your body and society throws at you, you’re starting to actually enjoy your “new life”.
I had to realise that having a disability doesn’t mean I’m less of a human. It means that my life path is different and that some days will be really hard to get through because of the pain, or all of the cr*p I have to go through with the medical system, but it doesn’t mean I can’t find ways to enjoy my life.
Personally, I was very lucky to be emotionally strong enough to deal with everything and to have people who were by my side no matter what. While it was painful to have so many people leave me because they felt uncomfortable around me and my disability, I couldn’t have done it without those who stayed. It only showed me who I can count on.
If you know someone young who develops a chronic illness or disability, just show them that you’re there. Listen to what they have to say, it will be beneficial for the two of you, and guide you both through the difficult changes.
Remember that their painful experiences give them wisdom, the kind of wisdom that your peers and even some adults may not have. When they’re ready to cry thinking about their past, make sure they don’t forget what they have gained.
J: Are you still actively participating in high school? Are your parents and teachers involved in adapting your education to meet your needs?
H: Yes, I’m currently finishing my 2nd year of high school, so two more years to go. I am very fortunate to have people who made sure I got my education no matter what. Before the pandemic, teachers would come over to my house for the lessons but now we’ve switched to online lessons because it’s safer for me. My syllabus is almost exactly the same as my peers’, and I ask my teachers to treat me fairly.
Intellectually, I’m very ambitious. I know what I’d like to do in the future, and even though it would’ve been way easier, I didn’t let my illness stop me from pursuing my challenging plans. I still have to adjust my plans to what’s within the Polish education system’s capacity of course, but so far, the one on one lessons have been extremely successful. The pace is adjusted to meet my needs, and when I don’t understand something, the teachers notice and make sure I can spend more time on that material if needed.
I get good grades but that’s not the reason I study hard. I actually enjoy learning about things I’m interested in!
J: What sacrifices have you had to make in order to finish school while still pursuing your complex medical needs?
H: I had to repeat 8th grade because I was too weak to have classes with my teachers, and had been in hospital almost constantly. It was really hard for me to make peace with that, because I was really angry about having to surrender to all that lost time. In hindsight, I’m glad I had that year, because when I wasn’t in hospital, I had time to recharge and get my energy back. I was also able to impress everyone with my new and improved English skills after watching so many British and American TV shows!
Transitioning from being at school along my peers to having classes at home with only a teacher in the room was definitely a big adjustment, but my teachers were very supportive and made sure I was comfortable enough to learn.
I’ll probably have to change my plans for next year because of my disability. I was supposed to start my IB diploma program, but apparently no one has ever done it without going to school, so we don’t yet know if or how that will work. It’s going to be very disappointing if I have to change my education path when I know I could cope with it intellectually, and it’s only my physically disabilities stopping me, but I know whatever happens I’ll survive.
J: What has helped you through your difficult experiences of chronic illness as a teenager? Do you feel you have developed any positive traits from the extra adversity you’ve had to face?
H: Therapy, emotional maturity, music, people I’ve met throughout the years, stories I’ve heard in the hospitals and my family. Those are the things that helped me the most with my journey.
I’ve been in therapy since 2019 and it’s helped me become more self-aware, more confident, and more in touch with the unpleasant feelings I was trying to avoid. I’ve been lucky to have a good therapist guiding me through my medical journey, helping me work through my medical trauma, and supporting me even with my crazy ideas and plans.
Emotional maturity is something I’ve gained because of the people I’ve been able to look up to during my hard experiences. All the hardships I’ve gone through have made me more resilient and taught me empathy. I have great understanding of pain and of joy. I’ve learned what’s really important in life, and how fragile it all really is.
I’ve learned a lot from other the patients I have met in different hospitals, and I’ve been honoured that they have been willing to share their stories with me. It’s something I’ll treasure for the rest of my life.
I can’t begin to explain how grateful I am for all the non-material things I’ve gained because of my difficult journey. People don’t realise how much power and wisdom disabled people or people with chronic illnesses have.
I’ve learned that it’s pointless to worry about the things I can’t control. If I worried about all the bad things in my life I’d have gone crazy long ago! I don’t necessarily know if everything’s going to be okay, but I know that no matter what life puts me through, I’ll eventually be alright. If life requires me to go through hell from time to time, I’ll walk on by as if I own the place.
J: What are your goals for the future, both for Fullabilities and for yourself personally?
H: I have so much faith in both my own future and that of Fullabilities.
Personally, big changes are about to happen in my life (turning 18, meeting new doctors, graduating high school, starting college, and many more). I’m excited for the next chapter. Obviously, I’m praying I’ll face them in an upright position, but I’m also ready to tackle these challenges no matter what.
I plan to keep on advocating for what I feel is right, and that keep growing without letting the world corrupt the good inside me. I hope that I’ll be able to pursue my dreams and academic ambitions despite having some disadvantages, and that eventually my condition will improve enough for me to sit and stand, and move around in a wheelchair.
I hope that Fullabilities and our fellow disability and chronic illness advocates will keep evolving, and that together we will be able to make a tangible difference in the world. I want to see a world that is more accessible and inclusive to people with any type of physical or mental limitation.
I also recently filmed a video with Hanna’s colleagues Benedykt and Ola for the Fullabilities YouTube channel. We discussed everything from my personal experiences with disability, to the future of genetic diseases and what we as individuals can do to help advance their treatment. It was a really fascinating interview and I highly encourage you to check it out here!
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