As Princess Marie’s Closet celebrates its 5th anniversary today, I really want to thank you for following along and taking an interest in Princess Marie’s work. ❤️ Also a special thank you to all the charities who answered all my questions and shared info during all those years
This is a very personal piece. I initially write it in order to get all of my feelings about it in a healthy way which I was struggling to do in real life. I was very hesitant to post it and even though I took off the most personal passages before posting this, I am still very nervous. However, after speaking with several people online who recognized themselves in my story, I thought maybe this could help people. Most importantly, it’s helping me. By putting this out in the open, I’m fighting several of my fears at once: the fear of what people will think of me but also the fear of admitting what this disease is doing to my physical and mental health. I’m doing this for me as a way to free myself from that weight on my shoulders which became awful to bear because I didn’t want to talk about it with anyone. Please be respectful. I’m open to any discussions about this piece as long as it’s respectful and understanding. I’m not a doctor, not a scientist,I’m not doing this for pity or attention, I’m only speaking from my own experience here in hope that people will want to learn more about chronic pain diseases and their impact on mental health.
I need to thank Laura, @japanese_ginger, for all her help through this. Like I said, I hesitated a lot and I was terrified of posting this but she supported me, listened to me and gave me so many good advice, I don’t know what I would do without her. Thank you, Laura, I love you.
I would also like to share the song ‘Broken’ by Lifehouse. While this depressing song resonates with me for many reasons, most of the lyrics feels very relatable when I’m having breakdowns or I’m in a pain crisis (even though I’m sure it was written with a very different purpose in mind) and it’s the song I listened to on repeat when I wrote this and I couldn’t imagine not sharing it after putting something so personal in the open. You can listen to it here.
“I’m falling apart
I’m barely breathing
With a broken heart
That’s still beating
In the pain
Is there healing?”
I have a chronic pain disease. And I’m tired of the stigma. Here’s the (long) story: my health issues started when I was 10. I was diagnosed with pneumonia. The only reason the doctor agreed to me staying at home and not staying in the hospital during my treatment was that my dad was a firefighter and my mom was a stay at home mom and they could watch over me. At the time, I thought these weeks were the worst of my life. I stayed at home, on bed rest, for 2 months. When I was allowed to go back to school, it was January and everyone was on high alert because there was a high risk of catching pneumonia – or worse- again. Thankfully, nothing happened and I thought the worst was over and the only reminders of that pneumonia were the weight loss and a screwed up immune system (because the treatment was really strong for a 10 years old girl).
A few months later, during one of my dance classes, I fell and hurt my knee. It took me weeks to get back on form and being able to dance again. I started dancing when I was 4 and I knew that this was what I wanted to do when I was a grown up. Dancing meant everything to me. It was the only moment I felt like I was 100% me, like I could do anything. I felt so powerful when I was dancing, like I was letting go of everything and there was only me and the music. I had to stop dancing for 3 months because of pneumonia and then again for 6 weeks because of my knee and I missed it so much, it was insane. It felt like I couldn’t live without it, it was the only thing I was really good at and I wanted to do that my whole life.
A year later, I’m 11 and I’m starting middle school. I’m starting to feel pain in my back but I don’t pay a lot of attention to it as it’s not unusual to feel pain when you’re dancing 6 to 8 hours a week. The whole thing makes me nervous though so my mom decides to take me to the doctor. That same doctor who diagnosed the pneumonia very early and thus saved my life. I trusted him so much. The diagnosis is made: I have a very small scoliosis. Nothing too important, it won’t prevent me from dancing, we just need to check up regularly to make sure it does not get worse as I’m still growing up. He tells me to do physiotherapy to help with the posture because it turns out the problems come from my shoulders. Despite his best reassurances, it quickly becomes obvious that I can’t keep dancing as much while doing physiotherapy. So I decided to stop dance classes (3 hours a week) for the year to focus on my health. Those were my doctor’s words at the time: “Stop dance classes for the year, keep dancing at home in a moderate rhythm and focus on physiotherapy and school for the time being. I swear you would not lose anything.” I was 11 and I trusted him so much.
The thing is, I’m sure he meant well at first but when that school year ended, the pain was still there. We solved the problems with my shoulders in physiotherapy, so then we focused on my scoliosis but it took so much time for so little long-term results. I was determined to start dance classes at the beginning of the new school year though so I talked to my physiotherapist about it and this is when it happened. That moment that changed my life forever. He said: ‘I’m sorry. I know how much this means to you, I know this is what you’ve been fighting for this whole year but you can’t start dance classes again.’Determined as ever, I was ready to say that I could wait another few months when he said:‘ I don’t think you’ll ever be able to be a professional dancer, you don’t have the physical condition for it. I’m so sorry.’I was 12 and a half and my world ended.
This was the start of my nightmare. I was so disappointed and hurt that I focused on school only and I did good but it was just really ignoring the problem. I stopped doing physiotherapy after a few months and stopped thinking about what I would want to do when I was grown up.
The real injustice though started a few years after that, when I was 16 and in high school. The pain was back and I had started physiotherapy again when I was 14. We were working through it and I had real hopes. Until my doctor changed everything. During my last year of high school, and during the two years after (when I did an intensive course that prepares you for big schools instead of college), the pain kept getting worse and worse. I kept going to the doctor saying that I needed an x-ray, that we needed to check if everything was okay because I knew something was happening. You know what his answer was? “Are you sure? I don’t see anything different. Are you sure it’s not to miss some classes? Do you really need physiotherapy? Because if it’s just to get massages, it’s not worth it. You’re still growing, I’m sure it’s all in your head”. That’s what I heard. Every.Single.Time. “It’s all in your head”. Between 2014 (I was 16) and 2017 (I was 19), I didn’t do any x-rays or check-ups. Between 2015 and 2017, I had 40 hours of classes a week and physiotherapy was literally the only thing that kept me going.
When I’m in pain (which is every day), I feel pain in my lower back and in my neck mostly but also in my shoulders and shoulder blades and alongside my spine on both sides. It isn’t only the muscles, it’s also the bones. It feels like everything is on fire or like I’m getting stabbed over and over again. It wakes me up at night or even worse, it keeps me up at night. I spent countless nights pacing in my bedroom because it hurt too much to sit or lay down and the pain was stronger than the tiredness. Sometimes I can’t walk or I can’t trust my legs because they’re so weak. I was claustrophobic before everything started and it got worse because the pain makes me feel like everything inside me is shrinking and like my own body is closing on me. I have panic attacks because of the pain. It’s traumatic and that’s how it feels every day and night now and it was already the case back then.
I knew that something was wrong but I trusted that doctor so much. He made me feel paranoid, he made me feel like I couldn’t trust my body, like I didn’t know my own body and that felt awful.
In June 2017, during the last month of that intensive course, I let go of the pressure and the adrenaline that got me through those two very long years as exams were done and I only had a few classes to attend. During one of those classes, I had a big crisis. Everything went to hell, it was happening in front of my classmates and I felt like I was dying. This was when I went to another doctor who put me on bed rest and made me do another x-ray, the first one in three years. Turns out, it wasn’t scoliosis anymore. It was a full-blown spine deviation. I was right and my previous doctor was wrong.
From that moment, I started seeing plenty of specialists and they all tried to find solutions but what no one ever dared to tell me is: it’s too late. We all know it but no one really wants to admit it. I’m done growing up so a back brace won’t help (we tried and it didn’t do anything) and surgery isn’t an option. I’m 20, I’ve had health issues for half of my life already and it’s never going to stop. On the contrary, the pain is going to get worse as I get older.
I got the physical part under control though now. I have my meds, I have physiotherapy, I have electrodes and heat pads. I skip classes when I need to rest and I have a healthy lifestyle. I’m used to the pain. It hurts like a bitch every day but I’m used to it now. No, the hardest part is the mental health part.
I feel like I’ve already written too much but I think it’s important to know how hard dealing with the physical part has been (and still is) to understand why chronic pain diseases are so hard to deal with on a psychological aspect. Once again, I’m only talking for myself here but this is what I want to say:
“Minute by Minute”. That’s the only way I’m getting through this. I can’t allow myself to think about the past or the future. The past is full of pain and the future is full of hope. I don’t want hope. I can’t allow myself to have hopes or plans for the future because the only constant in my life is the pain. And everything I do and everything I will do will be determined by that. I had so many false hopes about treatments, about solutions, about breakthroughs, I can’t handle anything more. I never really knew how to explain this to people until I watched SKAM and one of the characters said this: “And when everything seems hopeless, just take one day at a time. And if one day gets too much, just take it one hour at a time. And if one hour gets too much, just take it one minute at a time.” This is what I’m doing. I can’t allow myself anything more.
The disappointments and the frustration. Every time I’d go see a new specialist, I was hoping that they would be able to help me. They’re trying their best but we all know there’s not much they can do at this point. When I’m writing this, we still don’t know exactly what causes the pain. Of course, the spine deviation causes pain but I shouldn’t be in so much pain if it was only the spine deviation. And I know not a lot of people will understand this – and I don’t mean to disrespect anyone or make ill-informed comparisons – but I did an MRI a few months ago (and you can guess how terrifying it was for a claustrophobic person) in order to see if there wasn’t any other diseases or something like a tumor that could explain the pain, my only hope was that there would be something on there. That would have been good news for me. Because I need to put a name on this so much. There was nothing out of the ordinary on the scan and the guy there was smiling so big when he announced it because of course, for him and for my mom, it was good news. I remember having a big fight with my mom about it in the car, I was so disappointed and she couldn’t understand why. I explained to her that I wished there would have been something because – of course, it would have been a bad news- but at least, we’d have a name for the problem and we could work on a treatment plan. It would have meant that maybe my previous doctor wasn’t entirely to blame because there was something that we couldn’t have suspected back then, it would have meant we wouldn’t have lost three years, it would have meant I wouldn’t have suffered for a reason. As it is, I’m in pain and we don’t know why and we don’t know what to do about it.
Relationships with family/friends/strangers. That’s truly one of the hardest parts. No one can understand what I’m going through. What’s worse is my mother has a chronic pain disease too but she actually knows what disease she has, she has a treatment and everything but she doesn’t understand my feelings. I don’t talk about this to anyone in real life, I always try to minimize the whole thing. I’m in pain all the time and I’m always scared of being too much to deal with. I always feel guilty when my friends don’t dare to make plans in front of me because they know I won’t be able to go with them. I’m putting them through so much and when I’m down, they get me back up but I can see how hard it is from them so I keep things from them, I minimalize the pain and I push myself too much. But keeping things from people every minute of every day is hard, it feels so lonely. Even when I share my feelings, they still can’t understand and I know they’re doing their best and I love them for it. It doesn’t change this huge feeling of loneliness creeping inside when you can see the people you love the most being completely lost when faced with your pain and seeing so much pity in their eyes. I can’t deal with pity. I don’t want people thinking I’m weak. I’m fighting every day to get up and be better, I want people to see me as someone strong even when I break down. There’s also this guilt when you think you’re complaining too much or when people say you should stop complaining because some people have it worse than you. Yes, of course. But that doesn’t invalidate my feelings. It shouldn’t. The worse though is the misunderstanding from strangers. Because for a lot of people, chronic pain diseases don’t exist. When I say my back hurts, people say ‘you’re 20, get over it!’ or ‘you’re just lazy, exercise and it’ll be better’. As if it was that easy. There’s actually an ad that says this and I want to break my TV every time I see it. We need to educate people about chronic pain disease and their impact on everyday life.
What people often don’t realize when it comes to chronic pain diseases is that it IS traumatic to be in pain every day and every night. It is very hard to endure mentally too. It often leads to depression and anxiety. There are days when I don’t want to wake up and get out of my bed because I know the pain is going to be worse than the day before and I’m afraid. There are days when I consider myself a danger to myself and to others. It’s hard psychologically to think: ‘okay, you’re not driving today because you don’t trust yourself so you are potentially a danger to others’. And it’s even harder to then ask someone to drive you and when they ask why you have to admit that you’re a danger to people. It’s hard to accept. Recently Lady Gaga said: ‘Chronic pain is no joke. And it’s every day waking up not knowing how you’re going to feel.’ The thing is, it’s a never-ending circle. I’m in pain so I don’t sleep well. I’m tired so the pain increases during the day and then I have troubles sleeping and the circle continues and there’s no way of getting out of it. Stress adds to that. And every day is stressful because I’m scared every day. I could have a crisis in class, I could not feel my legs after sitting for too long etc.. so many dreadful scenarios going through my head all the time. I’ve never thought about ending my life. But I would be lying if I said I never thought about taking more meds than allowed. Not to end my life but just to make sure I wouldn’t feel anything for a while, just so that I could rest and feel peaceful. I can’t remember the last time I was pain-free, I really can’t and it’s killing me. I’ve never taken more meds than allowed but I felt so guilty just thinking about it because I know what the consequences would be. On the other hand, I’m considering more and more stopping everything. Because it gets harder to go through all these treatments while knowing nothing is going to help. I don’t want hope, I want a long-term solution and there isn’t any. So what’s the point of going through all these medical stuff if it doesn’t help me? It’s going to get worse either way and we all know it.
What scares me the most though – and I’ve talked about it earlier- is the future. When I was a teenager, my parents were there to take care of me. And don’t get me wrong, they still are. But I’m my own responsibility now and we’re entering the phase when we start asking ourselves serious questions. I’ve avoided them for as long as I could but the other day the doctor said: “you’ll have to come see me on your own at some point this year because we need to talk about some things.”And I know what he meant by that because he already asked me last year and I conveniently forgot our appointment. He means work and how we’re going to deal with the pain and the inconveniences when I get a real job but most importantly, he means children. And that scares the hell out of me. Because I want children, I really do. But there’s absolutely no guarantee that I’ll be able to physically carry them without being on bed rest the whole time. In simple terms, carrying a child would cause strain on my spine in my lower back for obvious reasons and as I’m already quite thin, I’m not sure I’ll be physically able to handle the extra pain. And that scares me a lot. And I’m only 20 so I don’t want to think about that but if we’re realistic, we’ll need to at some point.
All in all – and while I tried to not think about it, it’s also a huge part of why I’m feeling so bad- I’m paying my doctor’s mistake. He made one mistake but I’m the one paying for it. And I will pay for it my whole life. It is proven that if we had caught the increase of the curve earlier, we could have prevented it from increasing further and everything would be different now. I wouldn’t be in pain every day, depressed and anxious. I wouldn’t have panic attacks or claustrophobia attacks because of the pain. I would be able to live my life normally. His mistake cost me everything and he never apologized for it. I haven’t seen him since I changed doctors but I don’t know how I’ll react if I see him again. He cost me everything and he isn’t even paying for it. I wrote this to talk about chronic pain diseases and how hard they are on our mental health from my own experience. But a huge part of my experience is also a doctor not trusting me and I know this happens a lot and it makes me so angry. A doctor should always listen to their patient first. Please, if you feel like something is wrong and your doctor doesn’t take you seriously, please go see another doctor! Don’t wait until it’s too late like I did. Trusting that doctor on the basis that he saved my life once and that he was the father of one of my best friend was one of my worst decision.
When I’m editing this, the day before World Mental Health Day, it’s the middle of the night and I’m not sleeping because I am sick but mostly because I’m terrified. It turns out I have bronchitis and my doctor (the very good one) decided I should stay home because he was afraid I would catch another virus and end up having pneumonia again. And when I came home I had a panic attack because I was terrified of getting pneumonia again. I know my lungs never recovered to their full capacity after the first one. The thing is, having a cold is fine. Having bronchitis isn’t. Because it’s a lot more tiring for my already weak body and it causes a lot more physical pain and it continues the circle of pain-> no sleep -> tiredness->more pain-> even less sleep etc…. I’m sure it’s going to be fine because I went to see my doctor very early (as soon as I realized I wasn’t breathing correctly because I’m paranoid about that) but still, I hadn’t had bronchitis in a long time and there’s always that risk of pneumonia, like a shadow following me everywhere that won’t leave until I feel 100% better. In the meantime, I’m going to be super anxious about it and it’s all I’m going to think about in the next week.
I didn’t write this to lecture anyone or to ask for pity. I first wrote this for myself, because I wasn’t dealing well with these emotions at all and I needed to get them out in a healthy way. But then I talked to my friends about it and I saw people online and on forums saying that their doctors weren’t taking them seriously or saying that they were tired of people not understanding what chronic pain diseases are and how hard they are on mental health and I thought that maybe I should share my own experience. Because yes, it’s hard. But I still consider myself lucky because I have a good support system which is not the case for everyone. When Lady Gaga made an interview recently about her fibromyalgia – which is a chronic pain disease- I felt so proud because having someone as famous and as influential as Lady Gaga speaking out means a lot to me. I hope it helps raise awareness. And it makes me feel a little less lonely in this nightmare. So I thought that if sharing my experience would help people either learn more about chronic pain disease or recognize themselves in some of what I said – even if it is just one person- then it would be worth reliving all these things I wish I could forget. It took me a lot to write this because it’s 10 years of my life, it was hard to think about all of this again and I know there’s going to be negative reactions to this so I was afraid of putting all of that out there because it’s so personal. But if it helps people, then it’s worth it.
Here are some quotes that express my feelings way more eloquently than I just did and some informative links that I hope will help you learn more and understand chronic pain diseases better (specific to neck and back pain)
“Some days, 24 hours is too much to stay put in, so I take the day hour by hour, moment by moment. I break the task, the challenge, the fear into small, bite-size pieces. I can handle a piece of fear, depression, anger, pain, sadness, loneliness, illness. I actually put my hands up to my face, one next to each eye, like blinders on a horse.” Regina Brett
“If I only could explain
How much I miss
that precious moment
when I was free
from the shackles of chronic pain.”
― Jenni Johanna Toivonen
“Somewhere inside that hurting body, there is something better, something stronger, something real.”
― R. M. Drake
“Sometimes, this disapproval of how you are managing your pain crosses over to disbelief that you are in as much pain as you say you are. They don’t believe that your pain is a legitimate enough reason to rest or nap or cry or take narcotic medications or not go to work or to go to the doctor. They might think that you are making too big of a deal out of it. They doubt the legitimacy of the pain itself. This kind of stigma is the source of the dreaded accusation that chronic pain is “all in your head.” It’s as if to say that you are making a mountain out of a molehill.” “The stigma of chronic pain is one of the most difficult aspects of living with chronic pain. If you have chronic pain, people can sometimes judge you for it. Specifically, they can sometimes disapprovingly judge you for how you are coping with it. If you rest or nap because of the pain, they think you rest or nap too much. If they catch you crying, they become impatient and think you cry too much. If you don’t work because of the pain, you face scrutiny over why you don’t. If you go to your healthcare provider, they ask, “Are you going to the doctor again?” Maybe, they think that you take too many medications. In any of these ways, they disapprove of how you are coping with pain. These disapproving judgments are the stigma of living with chronic pain.”
― Murray J. McAlister
“That pain moves when you move; it mutters between every breath; it spikes your ears; it rips. You think pain can’t be any more horrible than that. Until you discover that the well is bottomless. There’s always more.”
― Ilsa J. Bick, Drowning Instinct