I've written this blog primarily through the eyes of a Spondylitis and Fibromyalgia patient, but of course chronic illness comes in many forms. It can impact both the mind and the body. Although we've made strides as a society, there is still incredible stigma surrounding mental illness; stereotypes and prejudices that demote its sufferers to "second class citizens."
"If they were just stronger, they wouldn't be mentally ill"
"Everyone gets sad sometimes...those people just needs better coping skills."
"Who knows what they're capable of. After all, they're not in their right minds."
If we're being honest, most of us have heard (or perhaps even thought?) something similar... after all, our society says it's so. Both overtly and subconsciously, we're taught to remain fearful and ashamed of mental illness. It's no wonder many people hide their diagnoses. In this "don't ask, don't tell" atmosphere, those who disclose their condition can suffer profound losses - publicly, interpersonally, occupationally, medically, etc. While I've mentioned depression as part of my story, I haven't delved deeply into it. I suppose it just felt simpler and safer to focus on my physical conditions.
Like any marginalized group, many of us living with mental illness feel powerless to enact change, but I'm not sold. In a society where we're asked to be voiceless, what could be more powerful than telling you story? What better victory than to live and to love in the face of illness? The great Harvey Milk once said, "Hope will never be silent", and this is why I began my "spotlight series." Those of us who are sick don't often have the chance to compare notes with each other, nor do we allow our health to be the center of attention. My hope for these interviews was to promote discussion, trade resources, and most importantly, remind us all that we're not alone.
I recently wrote this post calling for mental health spotlights, and many of you reached out in support of this idea. Slowly, but surely more people are courageously stepping forward to tell their stories. I wanted to be one of them, so I answered my own interview questions below (a powerful experience, to say the least). No matter what you're coping with, remember that someone has been there before you; they've felt the darkness of the future, and found the light again.
To distance myself from depression and mental illness would be to deny my own story, and I wont let that happen. To my cherished readers: thank you for allowing me the respect and safety to speak my truth...
What is your diagnosis? What is the year you were first diagnosed and how old were you ?
My first real bought of depression occurred in the fall of 2007 when I was a senior in college. Following my first extreme flare of Spondylitis, medical problems within my family, and a sudden break-up with my long-term boyfriend, I found myself sinking over several months. After meeting with the school psychiatrist in November of 2007, I was diagnosed with depression and decided to take anti-depressants for the first time.
Perhaps the most important thing is you are not alone. There are so many paths that can lead to depression and countless lives that have been touched by it. This illness knows no boundaries. It's crucial to understand what you're dealing with, since depression can be a powerful, fast-acting illness; one that can quickly distort your reality. However bad it gets, always remember there is way out. Millions of people have been in that same dark place and found their way back into the light. In fact, most people have accomplished this more than once (I happen to be one of them).
Once I "beat" depression that first time, I made the mistake of believing it was gone forever. No matter what, stay tuned into yourself and become your strongest advocate. Know your "baseline." In other words, what feels right and what feels wrong for you emotionally? This way, you'll recognize when you're slipping. Maybe you feel distant from the "you" you've always known, but trust yourself. Depression or no depression, nothing is more powerful than your intuition.
In my case, my mental pain is closely intertwined with my physical pain. When my pain flares, I inevitably get scared. Even though my life has been filled with the ups and downs of illness, pain is a game changer. It makes it difficult to see past the present moment. Now that I've experienced more than one depressive episode, I've discovered a pattern and have learned to recognize my unique warning signs: the growing insecurities, the constant tears, the numbness toward the things and people I love, and ultimately the overwhelming sense of hopelessness.
Please also know that depression is just as "valid" as any physical illness and you have a right to receive the best care possible. More than anything, value yourself enough to seek help as soon as possible. The longer you wait, the harder it may be to get on top of. There will be no judgement from anyone. On the contrary, I've been told by people how "impressive" and "brave" I am for recognizing my own needs.
I know it may feel easier to give up, but please believe that life can and will get better. You can and will get through this. If you're in a desperate spot, don't wait to reach out. Talk to a trusted person in your life and tell them where your mind is. If you feel that your personal support system is lacking or unavailable, call 1-800-273-TALK or any number of other hotlines with real people on the line. They want to help, they want to listen, and they're not there to judge you. Most of all, remember that your life matters...probably more than you could even imagine. You are just as deserving of happiness as the next person. Claim this right for yourself, and take baby steps from there. If you feel like you're just going through the motions at first, that's okay. Get your mind on anything else and force yourself to complete the task (even if it's just brushing your teeth or taking a shower). However you might choose to do it, keep moving forward and fight for your peace of mind.
Please explain a bit how your condition affects you.
Prior to 2007, I had always known how to pull myself out of a "funk." I'd put on my favorite music, eat some ice cream, spend time with my dogs, and eventually my sadness would fade. But this was different. This sadness was relentless, unpredictable and physically painful. There was a constant lump in my throat. My chest ached, I had no appetite, and I had constant stomach pains. The tears would come at the drop of a hat and it was nearly impossible to concentrate in class. It felt as if I was losing myself; as if each day was taking me further away from the Maya I had always known. Nothing felt the same. Spending time with friends and doing my favorite activities no longer brought me joy. At that point, I was only just learning how to be open about Spondylitis and the pain associated with this disease. Now I had to somehow convey this mental anguish? I was scared and entirely lost.
My college was 8 hours from home and, although I spoke to my parents every day, I felt impossibly far from everyone. It was as if I was falling down some bottomless hole, while everyone and everything I knew was safe above ground. For the first time in my life, I lost my optimism. The reality of having a chronic autoimmune disease truly hit me, and I started feeling trapped. Instead of finding meaning in my diagnosis, I began focusing on the injustice of living in a "broken body." That's when the hopelessness took hold. During a time when my peers were excitedly planning for their futures, the thought of even one more day was unbearable. Life seemed impossibly long, and I convinced myself that I was unlovable. I convinced myself that I was alone.
It's not easy to admit, but I was having suicidal thoughts. I never had a plan and I don't believe I would have ever gone through with it. However, at that point, the thought of ending my pain seemed easier than living through it. To say that my parents' voices saved me wouldn't be an exaggeration. During my darkest moments, I thought only of my family, who would be utterly devastated if I were to leave them. Eventually I scared myself enough with this thinking that I contacted the school psychiatrist. It wasn't an easy call to make, but it was one of the best decisions I've ever made.
I was prescribed Zoloft (in a class of drugs called SSRIs) and, while the change was initially subtle, my world quickly stabilized. With this bit of help, my downward spiral ceased and allowed me to gain my footing. I was cautiously optimistic at first, but as times passed and I stuck with therapy, my perspective returned. I gradually gained the tools I needed to overcome this illness. By springtime, I was feeling like myself again - just in time for graduation and the beginning of my adult life.
For the next couple of years, things remained hopeful and steady. I deemed that first depressive episode as a fluke - a simple "phase" in my life. I fell madly in love with John and started graduate school at Columbia in the fall of 2009. Consequently, my energy turned toward helping people in need. Like many aspiring social workers, I fell pretty low on my own priority list. Just as I was getting in a groove, my world gradually turned upside down. The Spondylitis medication I had relied on for nearly a decade stopped working. Never before had I experienced that kind of pain; it was deep, burning, and relentless. Weeks went by and then turned into months. I had no control. As much as I tried to believe John and my parents when they said it was only temporary, I started slipping again. Last fall - nearly one year after my medication began failing - I found myself right back in that hole; the same place I had vowed never to return to.
Where do you get your strength?
This question has proved difficult for other spotlight participants, and now I see why. The truth is my strength is defined by many things: relationships, activities, places, memories, and things I'm sure I haven't yet identified. If you follow this blog, it's no secret that I'm blessed with an extraordinary support system; family, friends, and a fiance who love me unconditionally. I've sat beside my brother while he was getting a tattoo that read "Stand Tall" - a beautiful symbol of support for my battle with Spondylitis. My mom hasn't missed an important doctor's appointment since I was little. No matter how busy he may be, my dad is always there to listen, to empathize, and to make me as comfortable as possible. My sister-in-law offers a loving ear whenever I need it, refusing to let me be alone at my worst. As tempting as it might be to isolate myself, she makes sure that this doesn't happen. Each family member (my grandma, my aunts, my uncles, my cousins, and all of John's family members) plays a unique and vital role in my life. Furthermore, I have the friends I've always dreamed about. No matter how many miles or oceans may separate us, their love is close by and constant. They want to be involved in my daily life, come what may.
I also stay strong by actively choosing optimism, whenever possible. I learned from an early age that I could exist one of two ways: victimized by my disease, or grateful for the good that remained. I knew that I deserved happiness, so I pursued it with tenacity. If I couldn't keep up with my peers, I made sure to walk slowly enough to enjoy the view. I noticed and appreciated the smallest things, like the ant carrying a crumb twice its own size, or the cloud shaped like Mickey Mouse. I tried not to dwell on my physical limitations, and instead I cultivated my more sedentary interests; things that couldn't be taken away from me, no matter how sick I got. I wrote and sang and painted and sculpted. I was unabashedly childish and allowed myself to be excited by the silliest things. As it turns out, this is what kept my head above the water when things got tough.
Of course optimism isn't always possible, and it took me years to realize that's okay. There are times when the physical pain makes it simply impossible to focus on anything else. Sadly, I once believed that no one would love me without my optimism. I was terrified of being some kind of "downer" and worried that, without my smiles and silver linings, nobody would stick around. In some cases I was right, but those people weren't meant to be in my life for the long haul. Just like anything else, your outlook can ebb and flow. Don't fight it, but also realize when you're slipping. In my experience, depression comes when I've lost my perspective. No matter how much I may want to see the good, I just can't. Joy and humor are scarce and I lose my strength to fight. That's when I know I need help getting back on track...and that's okay too.
Having experienced true depression more than once, I now place tremendous value on life, health, and happiness. I still strive for optimism, but never with the same desperation. I know that life comes in waves. I know that the people who truly love me will still love me, even if I lose track of those silver linings for a while. Chronic illness has helped me find contentment within myself, to appreciate the simple joys, and to recognize true meaning in my struggle. I'm proud of speaking openly about my illness and communicating on a deeper level with my friends, my family, and people I've never met. Because of this blog, I've connected with some of my greatest heroes. Because I've written through times when it would have been much easier to stay quiet, I believe I've helped.
1. Love (in all its forms)
3. The arts
If you could send one message to medical professionals around the world, what would it be?
My fiance John recently began his fourth and final year of medical school. I've watched him cope with grumpy patients, endure grueling hours, and tackle countless day-long exams. I've also watched him miss out on memories with friends and family in order to be present for his patients and their families. I see him learning to cope with the daily pain and sadness that's all around him. So I know (as much as I can possible know) the sacrifice that you've all made. I thank you for all of it.
"It was during my medicine sub-internship when I truly realized the power of empathy, education, and the therapeutic relationship. I was called to readmit an elderly women (AS) that had suffered a hemorrhagic stroke one month prior; she had only been out of the hospital for several days . Through the heroic efforts of the neurosurgery team, AS was saved by undergoing a craniotomy with evacuation of the hemorrhage. The trauma from the bleed, however, left her unable to walk, feed herself, and communicate effectively. When she arrived under my care, her husband complained that her mental status had deteriorated over the past day. After a urinalysis turned up positive for leukocyte esterase and nitrites, my team suspected delirium secondary to a urinary tract infection, and we treated her appropriately.
The next morning, I saw AS and I was surprised at how much she had improved. However, over the course of that day her mental status waxed and waned, so we continued to rule out treatable causes of delirium. Later that day, I followed up with her husband. Initially, he was very upset that all of the tests and specialty consults had failed to yield an explanation for the delirium. Although our team felt that AS's care was progressing smoothly, her spouse clearly disagreed, and he made it known to us. At the time, I remember thinking to myself: "It was just a month ago that this man's wife was perfectly healthy. Now, because of the stroke, she has had nearly all of her abilities stripped from her." I couldn't imagine the pain and frustration he was feeling, so I decided to express this to him. From that point forward, the dynamic between the husband and my team completely changed; frustration was replaced with gratitude. I also sensed that the husband did not understand the nature of delirium, and that he was equating all of the tests with treatment. I explained to him that we were looking for causes that we could treat, but that often times delirium is a process that resolves on its own. I told him that he could help by frequently orienting his wife, and bringing things from home to make her room seem more familiar. Towards the end of AS's stay, her husband stopped and thanked me. He smiled, shook my hand, and said, "John, you'll make a good doctor." It was one of the most satisfying experiences I can recall...This experience only reinforced the importance of seeing the patient and the family in context, as well as my desire to work in a field where I could approach patients from a holistic point of view."