Staying Tuned In

As promised in my first post, I thought I'd elaborate on my theory about feelings and, more specifically, about self-pity. This topic has been at the forefront of my mind the past few weeks between dealing with an infection last month, hobbling to and from work on my bandaged foot and traversing what felt like a gauntlet of stairways, trains, buses and subway platforms. Because of the infection, I had to stop my weekly Humira injections that keep the inflammation at bay (an all too common cycle for me) and, as a result, have been dealing with a flare-up the past 2 months. I've also recently been formally diagnosed with migraines, but that's a post for another time. What I'm saying is that between burning and aching joints, coping with a new diagnosis, and managing an increasing cocktail of pills, antibiotics and painkillers, all signs point to self-pity...

I've said it before and I'll say it again and again. If you're dealing with disability, chronic illness or chronic pain, you are allowed to feel whatever you may feel. Confusion? Anger? Grief? I really think it's all okay...okay and normal. However, I find that it's crucial to put a name to those feelings - maybe not from minute to minute (that could get tiring), but certainly if they persist for any period of time. In my eyes, every emotion that comes through us has a place and purpose in our lives. Can't anger help light the fire under our butts that leads to change? Can't it push us to self-advocate and ensure we get the best care possible? It's also important to let ourselves grieve over the hand we've been dealt presently and what we may have lost to our illness in the past and in our future. It's not normal or "fair" to deal with illness every day, and it's healthy to acknowledge that.

Accepting our feelings means that first we are in tune with ourselves. Just as symptoms may come and go, so too will our feelings. You may feel overcome by them on Monday and by Tuesday the sun will be shining (literally or metaphorically). It's never a smooth road with illness and to deny our feelings is an unrealistic expectation to impose upon ourselves. People might call you a "hero", but try to remember you're not. It's a pretty sure bet that if you try to be one, you'll burn out, and it's already pretty heroic to battle illness. Plus, even super heroes have feelings.
I want to put a little of myself into that theory, which takes a bit of courage. During the fall of my senior year in college, I made my way back up to Maine with a hurting body and a broken heart to boot. I had just been dumped by my college boyfriend of two years. This came after (and because of) the first prolonged period of infection, flare-ups and sadness that I've experienced. He couldn't handle it, even though I tried my hardest not to let my illness affect our relationship. So there I was... in Waterville, Maine 7 hours away from my family and my pain was worse than it had ever been up until that point. Both my cousin and my dog Riley (also my family) had just been diagnosed with cancer. To top it off, that November I had the first of my ingrown toenails that I neglected, as a college student does. With the Humira in my system, my body retaliated. No antibiotics seemed to work, so I ended up enduring painful procedures and IV-infused antibiotics in the hospital for several days. Still the infection spread up my leg and doctors told me I'd possibly lose my toe. It being senior year, most of my friends at the time had trouble slowing down or understanding what I was going through. How could they? So I tried to tuck away the sadness and helplessness that was mounting inside because who had time for it anyway? It was senior year...

That didn't work for long. Each day I felt worse than the one before. I was crying in bathroom stalls and behind closed doors at the drop of a hat. For the first time, I felt trapped in my pain and in my body. I felt progressively more alone. At that point, I really believed I'd be hard-pressed to find someone who could ever love me through thick and think. Things just started looking bleak. I woke up sad and went to bed sad. I wasn't Maya because Maya had always tried to see beauty in things; always looked forward to something. When all of that stopped, I knew I had a problem. My horizons didn't seem broad as promised by the Senior career workshops that I half-heartedly attended. Nope. At that point, the future just seemed long and painful and lonely. I had always loved going to class, but even my desire to learn disappeared. I wanted to sleep all day and I lost somewhere around 15-20 pounds in a month or two. Worst of all, I was feeling (for the first time in my life) that life was not worth living. An awful thought, in retrospect, but that's where I was. If you're thinking I had all classic signs of depression, you're right and, in fact, that's what I was diagnosed with that December.This is why I say that holding your feelings at bay while coping with chronic pain can be downright destructive. Aside from the intense flare-up I was enduring my Senior year, there was a lot to be upset about and I shouldn't have felt I needed to deal with it all on my own. I should have used the supports I had and not worried so much about "burdening" people. After all, I would have (and already had) been there for them in a heartbeat. The changes in myself were scaring me and so I sought help at the counseling center of my college. That was one of the best decisions of my life. I still see a therapist (a social worker, naturally) today to keep me in touch with myself because I wont go back there. Therapy has taught me a lot, but I've also been willing to do the work outside of my sessions. I let myself have moments of self-pity here and there, but this is one feeling that can be tricky. It might sound strange, but I try to cap that feeling off at 15 minutes a day (at most). I've found - at least for me - that any more doesn't do much for me and often takes me backwards. Pity is not an emotion we should really waste much energy on. It's fine to grieve, but why should we pity ourselves? We're living with illness, trying to live and love the best we can, and surviving. Pity isn't what we deserve or need. Be frustrated, be sad, be pissed off, but let pity be a fleeting emotion.

Of course everyone dealing with illness is different, but I think it's crucial for all of us to let ourselves stay tuned in to the depth and duration of these feelings. Being that sad for five months of my life was not okay and I'm glad I had parents that helped support me, guide me and motivate me to get better. They snapped me back to life. I'm still learning to cope in a healthy way and it will always be a learning curve for me. I still have the same physical struggles (and even more so as the disease progresses and changes) and so I still battle these depressive tendencies when I'm hurting. The difference now is that I work through my feelings with a professional and with myself. Therapy has helped me recognize the place and purpose that various emotions have in my life and I've vowed never to let myself come second or third or twentieth anymore. If I do that, what good will I be to anyone else? Now I can recognize when I might be slipping and have learned that it's okay to use all the supports I have - the most important one being me. Thanks so much for reading.

Love,
Maya