chronic pain – SATURNEX

{The following is a deeply personal reflection on my battle with my mental and physical health, and the way the two relate.}

When is it time to be happy?

For as long as I remember, I’ve struggled with severe depression and anxiety. Since I was a child, the state of the world and the well-being of the sentient life upon it has always weighed unbearably on my mind. A difficult home life in a fundamentalist household darkened my view of the world and crushed my self-image. As an adolescent, I began having disabling panic attacks that caused me unspeakable trauma and left me shaking and vomiting. I often missed school.

There is so much pain and wrong in the world, and I constantly absorbed it all like a deluge crashing down upon me. And in fact, I felt it almost a moral duty to do so. I knew there was little I could do to change most of the wrong in the world – but I could feel. I could cry for the wrong, the lives lost, the people unjustly maligned and misunderstood. Someone should. And so as an adolescent I broke down often and fell into depression over tragedies I read in the newspaper, consumed for days or weeks or months with the unjust, senseless loss of a stranger who was murdered, or a bus of children that crashed. I sometimes had a sense that these things were all somehow my fault, that if I were a better person, I would change them. The sheer devastation and awfulness of any wrong or any evil in the world was so vast I could not support its weight. A God I had once loved and trusted became a monster.

Eventually, this constant, disabling anxiety and panic that had coursed through me for so long began to eat at my body. I started getting serious pain in my jaw, neck, and shoulders along with awful headaches. I went through a lot of high school in a daze of constant pain. I started getting treatments from a local dentist who thought he could fix my jaw problems. His treatments were painful and involved wearing large orthotic devices in my mouth every day. It took years to realize what was happening, but but his treatments ended up injuring me seriously, which necessitated a surgery in which my face was cut into seven pieces and reassembled with titanium plating.

The pain continued afterwards. I felt so lost and upset at the world. I could see no lesson or silver lining in the trauma – no sense in the pain I went through and the medical malpractice that put me through even more horror and helplessness.

***

I don’t think my musculoskeletal dysfunction – or any subsequent illness – was directly caused by my anxiety, but I understand now that it contributed to its progression. Most of all, it contributed to the way I reacted emotionally to it: I was deeply unhappy and in a constant state of fear. How could I be happy when I was in constant pain, and had no friends of my own age who could relate? When I had been through so much because of a doctor who messed up, with no recourse as a 16-year-old to get compensation? I did not have the mental resources to cope with this, along with all the other traumatic emotional baggage related to my family and religion.

I struggled with the idea of getting through life with constant pain, uncertain what the future held. I woke up in terror every night sweating and heart racing. There was no escape from this feeling of panic, whether waking or sleeping. I prayed to my body and mind, “Please, heal yourself. I will never take you for granted if I can just get some relief.”

The pain never went away. I just had to live with it – I didn’t have a choice. And I spent about 10 years deeply depressed and often suicidal. Years of therapy and psychiatric care helped minimally.

Near the end of college, I developed chronic inflammation of the stomach lining along with other mysterious gastrointestinal issues. I lost 20 pounds and could not eat without feeling nauseous. This feeling of being trapped in my own body was all too familiar. Again I desperately longed for a miracle. I regretted not enjoying food and eating more when I could. I started meditating and taking long walks. This was the only thing that helped, but it was no cure. I still was wasting away. Anxiety gnawed at me, flooding my stomach with harmful acid and making everything worse. But I had moments of clarity while walking or meditating that gave me some hope of another way of seeing things.

Over the next years I had multiple other illnesses, including chronic bronchitis, serious ear infections, asthma, scabies, chronic tonsillitis, a dangerous abscess that required hospitalization and surgery, etc. I never had a year without some kind of medical emergency, and I always struggled concurrently with my mental health and chronic pain. With each bout of illness, I struggled emotionally as much as I did physically. Each time, I wanted nothing more to be rid of it. Each time, I regretted that I had not enjoyed the bodily functions I had before the illness, and swore that if I recovered, I would learn to savor life. Without fail, every time I healed enough to escape crisis mode, I fell back into depression.

***

This year, I’ve gone through the biggest trial on my health I have had thus far. In February, I started having unexplained asthma symptoms. I increased the inhaled steroids I was already dependent on to no avail. Over the next months, my lungs constricted more and more. The doctors increased my medications and added new ones until I was in a haze of awful side effects and could no longer leave my house, yet my lungs continued to worsen. I flew to the US to stay with my parents, who were better equipped to take care of me while I was ill.

Eventually, after several months of agony, the doctors diagnosed me with a severe allergic reaction to mold, which had been present in my apartment unbeknownst to me. The diagnosis was like a fresh of breath air – finally there was some explanation. Bad news, yet welcome all the same. I could finally start on the path of recovery. It took a couple months, but my lungs started to heal.

Sadly, after taking high doses of steroids to quell the inflammation raging in my lungs, when I started trying to taper off, I had extreme withdrawal symptoms. The doctors told me this sometimes happened when someone became steroid dependent, and that I would have to just tough it out and wean very slowly. At the same time, my muscles and tendons started to atrophy due to being on steroids. Though on some days I felt hopeless, I kept my resolve. I wanted my life back.

At the end of very long months of weaning, I was ready to come off, and got a blood test to determine if I was ready. I came to the endocrinologist’s office hoping for good news. Instead, I got the news that I had developed a rare, life-threatening disease of the endocrine system called secondary adrenal insufficiency. I would not be able to come off steroids yet after all – instead I would need to take steroid replacement until my test results improved. They expected this not to take too long.

In order to improve my chances of recovery, I was switched to a different type of steroid. Unfortunately, it also did not provide me with coverage as well, meaning I suddenly felt even worse – constant headaches, fatigue, low energy, tremors, dizziness, nausea, and pain.

Fast-forward a month. I was tested again, and this time the test results were even worse. My adrenal glands were producing barely detectable levels of cortisol. I would need to continue taking steroids. The doctor said it was unknown how long I would have to do this. It is unclear whether I will ever regain normal function.

In the meantime, I am in a precarious position where I need to take steroids multiple times per day in order to survive. If I fail to take my medications or do not take extra during stress such as a flu or serious emotional stress, I will enter an adrenal crisis in which my blood pressure would drop severely and I could enter a coma. Most of the time, I feel unwell because it is difficult to precisely match my dosing to my steroid needs, which fluctuate with daily stress levels.

As someone who suffered from panic disorder most of my life, the irony does not escape me – my life now literally depends on me avoiding the fight-or-flight reaction that my brain has been activating constantly since childhood.

***

These days, I am rarely able to leave the house and barely have energy to do easy things such as hold a phone conversation or wash the dishes. I need crutches to walk due to tendon atrophy, and I cannot go outside during the day because I will faint in heat over 75 degrees. I’ve been unable to work or go to school for six months, interrupting the course of the Master’s degree I was completing. This has become my new normal. Yet again, I struggle on many days to keep a positive outlook. Many days I cry and feel so lonely and hopeless. Every cell in my body begs the universe to just let me have my old body back – the one I’ve cursed so many times.

And this is why I ask myself the question, when is finally the time to be happy?

Many people have experienced far worse, but still, I’ve been through some crazy things. Not many 27-year-olds could boast the list of medical traumas that I can. But I’m just so tired of the cycle, and realize that the emotional side of it is just as bad as the physical suffering.

Is there a way out of half of my suffering? Why do I do this to myself?

After so many of these experience, I see with clarity, if I can’t find happiness now, in the midst of disease and all the other awful crap in this world, I never will. There is no use in waiting for the day when I’m “healthy”, when things in life are “good.” Because what does that mean? I’ve always been fighting one disease or another – that’s just how my life is.

When I started having chronic pain, I felt disabled, like I’d lost my health forever. Then when I had GI issues, I realized how “good” I’d had it before – at least I could eat and nourish myself. When I couldn’t breathe, I thought, surely this is the worst thing – I will never take things for granted if I can just survive this. I did survive it, but now have an even more disabling condition.

This is a test. How can I break out of this cycle?

When you live life constantly depressed and consumed with anxiety, nothing can make you happy. There are things you wish you had, things in the world you wish you could change, and you think if only that thing would change, you could be happy. But it’s not true. It’s an illusion your disorder sells to you in order to keep you miserable – the myth of a happy life outside of your reach for one reason or another. The truth is that we are all our own worst enemies, and we have a better chance of bringing a little bit of goodness to this world if we don’t paralyze ourselves to begin with.

So here’s some real talk: I can’t walk very well at the moment, but I can walk. A few months ago I struggled to get air in and out of my lungs, but as I write this, my chest rises and falls effortlessly. I don’t feel good and take lots of pills to survive – but I’m surviving. My hands shake too much to play the piano the way I used to – but I can hear and enjoy music. I can’t go outside and enjoy the sun during the daytime, but I can sometimes enjoy the outdoors in the evening. I miss my boyfriend, my dog, my friends, the city of Berlin I call my home – but they are still there waiting for me. I can’t attend school but I can read books and expand my mind. I have healthcare, food, and a solid roof over my head. I actually have so many things at this very moment, and I want to love and value what I have now. I might not always have these things. Everything changes.

I’ve been told many times, “It’s okay, you have a right to be depressed, you have been through a lot.” And I think it’s right to allow people their sadness – after all, we all need to cope with life’s cruelties in different ways. And I still think the world is largely dark, cruel, unjust, and unfair. There are as many reasons to be depressed as there are tragedies and injustices on this blue planet. But I also think, what good does it do me to be depressed? All it does is tear what is left of me down further until there’s nothing left and I’m no good for anything at all.

So I ask myself, when is it time to finally be happy? When will I finally learn that out of the many battles I’m fighting, anxiety and depression are the most urgent?

It seems like an impossible task most days. But I’m trying. I’m taking concrete steps to change my the way my mind works. That gives me a measure of hope.

Sickness and pain are universal experiences that are part of being human. But most people experience them as something passing that happens every now and then over a lifetime. But others like myself experience it as a daily fact of life that changes in degree but is always present. Among the challenges that plague those of us who live with chronic pain and illness, one of the most soul crushing is the pressure to stay silent and not express the suffering we feel. Social norms and responsibilities, the desire to be useful and productive, to have fun and be positive around others — these pressures cause us to practice a brutal yet banally systematic suppression of negative emotion. It’s accepted to complain to your friends when you break your leg or get the flu. But when you are suffering every day, you cannot complain out of fear of burdening people, casting a shadow over their happiness. No one wants to be seen as broken. This emotional self-mutilation hurts, too, so this is my attempt to practice openness.

Like anyone else, chronically ill people have good days and bad days. But when you have chronic pain or illness, “good” days are better described as “less bad” days. This means that if you ask a chronically ill person if they are feeling better, and they say “yes, thank you,” this doesn’t mean they are feeling healthy or well in the sense that you understand it. In most cases, it means they are back to some kind of status quo where they are somewhat able to continue managing their daily life. They are at a point where they can muster the strength to hide their pain (again). They may be feeling better, but they are still hurting.

The longer a person suffers, the longer they practice emotional self-suppression. It’s a refined art and an expertise that is completely invisible to the outside world. In fact, sometimes chronic pain sufferers may be accused of being weak or overly sensitive: we might sometimes have more trouble coping with physical or emotional stress than the average person. However, this is because getting up in the morning and going about simple daily activities can be a monumental challenge in itself. That’s why it is so hurtful and depressing when loved ones or doctors are frustrated and disappointed with us: we wish our daily triumphs were recognized, but usually it’s a saga that plays out privately in our own minds.

While a lifetime of suffering trains chronic patients to become experts in hiding pain and acting as if nothing is wrong, no length of illness enables us to feel the pain less or to get used to it. Pain is pain, and the body hurts whether you experience it for a moment or for a decade.

Chronic pain and illness often means having a tumultuous love/hate relationship with life. My bad days often lead me to question the value of living, but my good days fill me with a kind of hope and joy that I think it’s hard to understand if you are not constantly in pain. It’s hard to describe the glorious feeling that comes on days when we can think, I’m hurting like hell, but today it’s okay, I can get through this. We appreciate the little things in life very deeply because they are often fleeting — here now and gone in a flash. Simple things like breathing, moving, hugging, become precious. Pain is our enemy, but also our teacher, our secret self, lodged in a corner of our heart like sand in an oyster.

Death may often be on our minds, and we may refuse to live and work as though it were a distant fiction that only the elderly need consider. If this is the case, please accept our choices. Not everyone is cut out for the 9 to 5 corporate job; the spouse, two kids, financial responsibility; — nor is everyone cut out to party all night, jump out of airplanes, go hike across a continent. Not everyone can muster the will and energy to live the life that seems normal, healthy, meaningful, and respectable to those around them.

Instead, sometimes we have to cry, let you down, break plans and promises; make unexpected choices, say socially inappropriate things at the moment the feeling rises; sometimes we have to live a life that looks a bit ugly and haphazard from the outside, but if you are flexible and open, listen and accept whatever we need to do to get through the pain and come out on the other side, you help us to live authentically: a fully, simply human spirit, who conquers the world on good days.