I recently “celebrated” my three year “Chronic Pain-iversary.” As of August 1, 2019, I spent every single day for the previous three years of my life (1,096 days to be exact) experiencing varying levels of chronic (dull, burning, stabbing, throbbing, shooting) pain throughout the entire right side of my body.
Could you tell? Can you imagine what that’s like?
I have been thinking about writing this for a while now, but it never felt like I had the right words to explain what I am going through. There were also fears, of course. Would my boss read it and think less of me? Would people believe me? Would it change the way people see me? Would the people who already know about my condition roll their eyes at this? Will people take me seriously?
Still, it feels important, necessary even, to show the world what chronic illness looks like from the other side. So many of us hide our experience. We keep our pain in the shadows because it may make other people uncomfortable, and secret away our symptoms because this world can be cruel to those with disabilities. We may further isolate ourselves because it is easier and we want to protect those we love, to protect ourselves. But I’m not interested in being alone anymore.
Related: 22 'Types' of Chronic Pain I Experience
I could spend a long time explaining the myriad of symptoms that accompany my fibromyalgia and psoriatic arthritis, but that is not what I want this post to be about. I don’t want to share information that can be found with a quick Google search. I want to tell you what it feels like actually living every day with chronic illness.
Before August 2016, I rarely visited the doctor. I received physicals when necessary, stopped in if I caught an illness I couldn’t address at home and went to the gynecologist every other year. I liked going to the doctor and I inherently trusted anyone with “Dr.” in front of their name. I saw that their profession was a rigorous and competitive one because their job was to know and be able to fix the human body. If am being totally honest with myself, I thought they knew everything about health and human physiology. I thought they had all the answers.
That was how my life had worked up to that point: you go to the doctor, get your prescription, get better, wait a couple years, repeat. Now I see doctors multiple times a month. In the past three years, I have consulted with two different primary care physicians, as well as a rheumatologist, ophthalmologist, therapist, gynecologist, neurologist, physical therapist and urologist. And not a single one of them knew everything. In fact, thanks to the Penn State library system and my unquenchable thirst for knowledge and a thorough understanding of what was happening to me, I often found information my doctors had never seen.
As a result, at one point in my journey, I suggested to my doctor that I might have an inflammatory arthritic condition, and I brought in printed and highlighted copies of legitimate medical research to back my claim. He said he “saw my logic,” but ultimately believed I was wrong. Upon my insistence, he referred me to a specialist. I was diagnosed with the illness I suggested within a few (very long) months.
Since then, I have learned to fiercely advocate for myself. I was never one to assert myself too boldly, and especially never one to openly challenge authority, so this was both terrifying and seriously empowering. And this new habit has extended beyond my health; I have learned to make myself a priority in my career and my relationships, and I have learned to stand more firmly in my opinions and decisions.
But the most important thing I have learned is that doctors, like all of us, are only human. They can only know so much, and sometimes finding your diagnosis or a successful treatment depends entirely on finding the right person who has learned and experienced the right thing to be able to help you. And more often than not, people with chronic illnesses are just waiting for science and technology. So we learn to wait; we learn to cope. My constant inner mantra: Slow down. Breathe. You will be OK.
Having multiple chronic illnesses, I deal with extreme fatigue, cognition problems, frequent infections and constant physical pain. It can make keeping up a challenge. But when I was first diagnosed, I had no idea what an impact it would have. I tried desperately to carry on unchanged, to keep pace with the person I was when I was healthy. I was busier than I have ever been, but I somehow pushed through. I was impressive. I was strong. I would beat my illness. I had to believe that was true.
Spoiler: it isn’t.
The truth is that I can’t beat this. It’s not a battle. It’s not something I can fight, and trying to “push through” and “be impressive” was ultimately a detriment to my health. My body is attacking itself, and there is nothing I can do to stop it. There is an intense feeling of betrayal in losing control of the one thing you thought was yours entirely. There is an even more intense feeling of absolute terror in realizing losing control of your body can mean losing control of your life.
Ultimately I had no choice but to slow down. As a person who consistently takes on more than she can handle, this lifestyle change took some time. In truth, I am still learning to pause once in a while, to deliberately choose where I spend my energy. It sounds simple on paper, but making those choices also means recognizing that I can’t do everything I want to anymore. I do not live in a world of infinite possibilities. I have to choose between my hobbies, education, work, friends, family and health. I can’t even count the number of pieces of myself I have lost in the process, how many dreams have died.
By the end of my time at Behrend, I was so burnt out that I considered not going back to school for my master’s degree, a longtime aspiration of mine. I thought I had reached my limit, that my body had finally taken away the thing I cherished most. I spent most of last year in a state of deep depression. I barely left my house. I would spend a week or more without showering. I thought about death. A lot.
Truthfully, I still think about dying. It’s hard not to. Suicide rates are much higher among those who live with chronic illnesses, and I’ve already had depression for more than a decade now. My mother and brother have also dealt with depression and suicide attempts, so I am very careful about my thoughts; I know what they can lead to. But lying and saying I feel like flowers and sunshine right now because I’m all “better” would be doing an extreme injustice to this story.
Yes, I’m better than I was last year. But I’m still depressed. I’m still in pain. I’m still suffering.
That is one of the concepts I have struggled with the most in adapting to my chronic illnesses, especially on a “good pain” day. In the beginning, having a good pain day felt like a ray of hope, like maybe I could wake up the next day and be free of the pain completely. I didn’t understand yet that these are lifelong illnesses with no cure and poor treatment/management options.
This aspect of my illness was also confusing for my friends and family. I said I was better, so why was it still so hard for me to stand up on my own or clean the house or do some yoga? At certain points, this forced me to exaggerate my symptoms, to talk about them too much just so the people around me would realize I was still sick, even if they couldn’t see it, even if I was feeling better.
Even more difficult than that was trying to explain the fluctuations in my symptoms. I can wake up in the morning with my pain at a 1-2 and, by the afternoon, it can rise to a 5-6 with no warning. Any plans I make are reliant on that unpredictability. I miss birthdays, holidays, family reunions, parties with my friends. I miss class. I miss work.
Taking an immunosuppressant to (hopefully, maybe, one day) control my symptoms also means I get sick a lot, and the consequences are more serious when I do. I have to be careful about where I go and who I touch. If I am worried I have pink eye, I also have to worry about going blind before I can get to a doctor. My muscles and joints have been and will continue to be weakened, so I worry incessantly about my future mobility and quality of life. Some people exercise to lose weight, to become more physically attractive, to maintain their health. They make those choices for themselves. But I don’t get those choices. I have to exercise because if I don’t I’ll lose the ability to walk.
I won’t pretend I don’t spend half my life frozen in fear at the thought of my future. Certain chronic illnesses are often more severe in young people; maybe because we have more time for them to progress or maybe because we face unique mental health challenges as a result of our diagnoses. But it isn’t just the future that haunts us. Being a young adult with a chronic illness has given me a sense of profound loss at the life I should be living, the time I will never get back. I have to live every day knowing this is likely the highest quality of life I will achieve. This is probably the best I will ever feel.
Furthermore, I have spent the last three years in mourning for the person I was before this all began. My perception of myself and the world around me has been irrevocably changed (though, admittedly, in some ways for the better). But I have lost some of my spirit, my hope, my blind optimism, and I have filled the empty spaces with sadness and bitter, bitter anger. I have been changed on a fundamental level, forced into a new identity that does not match the person I am, nor the person I want to become.
This is not the first time I have felt this way, though. After finding a successful treatment for my depression and anxiety, I was lost in a new identity I could not recognize. Who was I without my sadness? What would I write poetry about without the crushing despair that once fueled my words? What kind of person would I be without my two good friends, impulsivity and self-destruction?
Of course, now I know the answers to those questions. Getting my mental illness under control did change me. I do write less poetry, but I also spend less time curled up in a ball at the back of my shower sobbing at the thought of standing up to wash my hair. I’m quieter, gentler, more empathetic, less interested in seeking external attention or validation. I am happier. Most days, I genuinely want to be alive, to see what comes next.
However, getting my physical illness “under control” has been more challenging. Mental illness has always been a theme running through my life; it has always been there, always a small part of me. It felt like depression and anxiety emerged from within me; they were pieces I used to define myself, and treatment was as easy as self-care and pharmaceuticals. But being diagnosed with inflammatory arthritis and fibromyalgia completely blindsided me.
I was young, just 23 years old, with a whole future of wild, carefree adventure ahead of me. And then, literally overnight, my body started to wage its war against me. But in this case, self-care and pharmaceuticals were more like putting a band-aid on a bullet wound; you stop some of the bleeding, but the bullet’s still there, damaging you from the inside. The lack of medical solutions for my conditions means accepting these symptoms as my new reality, making peace with my body, adopting these marred and mangled pieces as a part of myself and hoping it doesn’t get worse.
I am climbing up this massive mountain of chronic illness, getting closer to the top, slipping at every daydream of a life without pain, but I am getting back up on that mountain all the same. I’m getting better every day, and that gives me a terrifying sense of hope that this will not always be who I am. I am taking my time now, forgiving myself for not always being or doing what I used to be and do, and learning (slowly) that it is OK to slip on that mountain once in a while. I am regaining a small sense of control, slowly retrieving tiny pieces of my old life, taping and stapling them back in place.
Still, I am not the same. I will never be the same. I feel broken, imperfect. But I keep reminding myself this is just a moment, one moment in an entire lifetime of them. There will be other moments, better moments.
I may not be ready for acceptance or making peace yet; I am still too angry, too sad, too bitter, too hopeless. All I have left is to just keep trying — to be better, to adapt, to stay alive, to make all this worth it. But somehow, just trying… it really is everything.