What it’s like to live with chronic pain

When I was watching House M.D. in my early-mid 20s I could never understand why Dr. House was such an angry, hostile, bitter, mean and irritable jerk. Until I could … when I got 30 and my severe back pain started. It all became way too relatable and I could see so clearly why there was so much bitterness and hostility in his character. You might still think that he is just a jerk (a genius one) and probably this is also part of the truth, but I can guarantee you that living with pain every day (as Dr. House did) can bring you to the darkest of places and your heart, mood and mind will become cold, austere and bleak.

After 5 years into this I am not in my darkest place now. Thanks God! But I have seen, felt and lived through a lot and I continue living with my struggles every day. There is a lot I want to say to the world, just to let it out of me, to make people notice, but it’s hard. Hard to find the words to explain, hard to find someone who would listen, someone who would understand, someone you would trust. But then I think that there are thousands, hundred thousands of people who know exactly how I feel and who are fighting the same battle, they are having the same resentment, fear, struggle, despair and pain. And I want to share it for them. They might never find this text or might stumble upon it randomly on the internet, but maybe it will make a difference for someone. Just to know that there are people out there who “get me”, just to be able to say to yourself “I am not alone in this”.

I have a lot of anger.

It all starts with an absolutely useless but such an inescapable question “Why is it happening to me?”. There is no answer to this, there is no point in drilling this question through your head again and again. And yet we do it tirelessly. We need the answer so badly because maybe then there would be something to blame. With no answer we are left all to ourselves, frustrated and steaming with anger. There are many reasons to be angry apart from the one above. Mostly it all comes down to the fact that I can’t do the things I want and I feel like a hostage of my own body. I feel trapped and betrayed by it, on the worst days I feel like my life has been taken away from me and I am left alone in misery dealing with pain.

On the other days …

I feel angry because I could not get a good night sleep. My back was hurting me during the night and here I am starting a new day with pain. I stand in the bathroom, brush my teeth and hate my life and myself. I hate that every morning the first thought that comes to my mind is “how is the pain today”? And when I notice that it’s bad today, I close my eyes and scream inside “WHY AGAIN”?

I feel angry because the queue at the supermarket is moving so slowly and my pain is the worst when I am standing. I prefer walking than standing, standing for prolonged time is killing me. And so I wait there in the queue, fixate my eyesight on one thing, bight my tongue, all tensed and just trying to survive through this moment.

I feel angry because going to a concert which was my birthday present turned out to be a nightmare. I had to stand there as well and it was unbearable. I was in so much pain and discomfort. I could not enjoy it at all and when I think of it all I remember is suffering.

I feel angry because doctors and therapists could not really help me. I’ve been to more than a dozen of them, tried different treatments, therapies and medications but there was little improvement. When you are not getting help from the system that is supposed to find the cause and solve it your only reaction is more frustration and anger.

I feel angry because I need to spend a ton amount of time on pain management! I want to do stuff and go on with my life, plans and dreams, but instead I have to stretch, foam roll, apply heat, do exercises, do this and that… Every day I spend around 2 (!) hours on the yoga mat stretching and foam rolling my body because this is the only thing that brings me relief.

I feel angry because a friend of mine tells me “Oh, I saw photos of you hiking/travelling/dancing, it means that your back is not hurting that much and you are feeling better, right?” I know they mean it well and they probably genuinely want me to be better, but when I hear that I am filled with anger and rage. It feels like they want to dismiss my pain, turn the page and move on. But the pain IS THERE even if you see me hiking or partying. I just pull myself together (when I physically can) and try to still enjoy my life no matter what. There are definitely better days and worse days, but if you see someone smiling with chronic pain it does not mean that the pain is gone and they are fine. It only means that they try to hold on to life and live it.

And sometimes I am jealous too.

I am jealous of people who post pictures of them doing sports or running. I was a very active person and I did gymnastics and a lot of resistance training. Now all I can do is walking. From time to time I still try to do a workout but every time I end up in more pain. I still do it pushing through the pain because it gives me endorphins and happiness, but after that I have to spend hours stretching and foam rolling my tensed muscles. Sometimes I see people complaining that they have to go to the gym but they get lazy and don’t feel like doing it… When I read it I can only cry, because if I could I would probably run to the gym every day!

I am jealous of people who don’t have to deal with pain every day, who don’t have to plan their lives around it, who can go for a long walk in the city center, who can go to a standing concert, who can go to a bar/Christmas market/wine fair and just stand and talk to their friends. Every one of this activities causes anxiety in me because I have to think of strategies to survive them!

And then there is fear. A lot of fear.

The “easiest” of fears is the fear of leaving home and going out. At home I have my yoga mat, my trigger balls, my heating pads – I know I can handle my pain and I am safe. I can just lay down, no explanations, no worries, no stress. When I have to go out I am constantly worried that my pain gets worse and I will have no shelter to retire to. I used to avoid cafes, restaurants, bars and friends’ gatherings because I could not bear the thought of being there in pain. Right now after 5 years I am not afraid that much anymore, I know in the worst case I will just take a taxi and go home. But I still feel unease. And I hate that I need to explain myself to my friends when I ask for a chair because I cannot keep standing.

I love travelling and no matter all my struggles I could still keep doing it through these years. But travelling too gives me a lot of anxiety. I remember talking to my physical therapist asking her if I should go volunteer to Taiwan. I was in a very bad place and I was so scared. But she told me with no hesitation to absolutely go for it. She told me that we tend to feel better on vacations and that everything would be fine. And it was. In all my travels I have pain and on occasional days I feel very bad, but on the other days I am quite fine and I am so grateful to myself that I have the courage to go for those adventures.

The “hard” fears are scary and nerve racking. They get under your skin and slowly destroy you from the inside. I was afraid for example that I would be in so much pain that I would lose my job. That one day I would not be able to pick myself up from the bed and make it to the office. I was imagining that I would get fired, stay without income, would not be able to pay for my rent and life, would eventually lose my residence permit in Germany and be deported back home to Russia.

I had a lot of nightmares as well. In my nightmares my boyfriend was always being killed and I was the reason for his death. I had those nightmares again and again, with different storylines but with the same meaning and ending. I was just so afraid that he would leave me and that it would all be my fault. How could he not if I am just a useless broken person in constant pain crying for hours? In my darkest days I was a mess. And I was so scared that I would be left alone all by myself because no one could handle living with a sad, depressive, incapable human being.

I was afraid that I would not be able to have a child. I would just physically be incapable of carrying it. This thought horrified me and I had to push it to the very back of my mind only to find it back in my nightmares.

I am not having those scary thoughts and fears right now, at least not in that intensity. I am feeling much better than in my darkest days and after all these years I found a way to believe in myself and that I would be able to live, work and love no matter what. Nevertheless, I write them down to share with the ones who are still living through this hell. I want to tell you that it is absolutely normal to have those fears and to feel hopeless and broken. But don’t let those fears stop you from living and trying to find your way. Don’t let them stop you believing in your future. I want you to know that you are much stronger than you think, your body even though flawed is resilient and capable and you should absolutely believe in yourself and life.

Living with chronic pain is hard. It is a daily struggle and it requires so much of you. But I can do it, you can do it, we can do it. In my Headspace meditation sessions I heard a phrase that gives me a lot of comfort and peace, it says “suffering is a shared human experience”. You never know what a friend, a neighbor, a colleague, a random person on the subway is going through. I am sharing my experience for people like me who need an echo of their own feelings. To feel understood, validated and valued. Our path is hard, sometimes it goes up sometimes it steeply goes down, but it should always go forward. No matter the anger and fear.

The last thing I want to ask you is to be kind to yourself. Your body and mind are dealing with a lot already, hating on them for not being as you want them to be is a way to nowhere. I can’t say I have mastered this piece myself, but I am on it. And I can clearly see whenever I am being kinder to myself I am having a better life and I can create a better life for people around me.

I wrote this in March 2021, but never published. 2 years later a lot has changed (to the best), but I wanted to share this anyway. Love yourself, trust your body and stay hopeful no matter what. The darkest moment will pass and you will learn to shine again. Sending you lots of love and support!

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