For the last three years, I have been living with chronic pain due to a botched stomach surgery that has led to clusters of stomach ulcers (nine at one time), scar tissue adhesions, and other issues that are only being guessed at by my many doctors and specialists. I’ve been prescribed medication to minimize the pain, but even that cannot eradicate the constant pain I feel.
My life has changed; I have changed. Once I had energy, clarity of mind, and of course, a mostly pain-free existence. For those who knew me before, and know me now, there are certain points I need to clarify. When I explain my situation, I’m not asking for pity or free passes, I’m telling you the facts of my life. Here goes…
I’m in pain a lot of the time. You won’t necessarily know because I’ve learned how to “mask” in public. “Masking” my pain is an essential way for me to continue to be social and involved. I want to be present with and for you, so I’ll deflect conversation from me to concentrate on you. It’s not that you are an effort, but the masking is. I want to forget the pain; I want to minimize it. I want my life to be about more than my physical sensations.
I’m tired. No, not tired, exhausted. I wake up every morning with pain, and often my sleep has been fitful and interrupted. But it’s not just about lack of sleep but the sheer effort it takes to endure the pain. I need a lot of downtime, and often my weekends are about rest. I can’t work a full week, and I certainly can’t be sure when the pain will become intolerable and I must rest or I’ll collapse. I’m not being dramatic. My energy is limited, and I try hard to keep my head up. Extraordinary circumstances for me are working full-time two days in a row or attending a social event. These things cost me. Despite the cost, I’m working toward managing my energy, and I still want to be social — no, I need to be social.
Chronic pain is lonely. Pain is very inward-looking. When I’m in pain, I’m forced to be less involved. It’s not just the time I need to rest; pain is isolating. No one can feel what I feel, and it’s not something I’d wish on anyone. Because of the medication I’m taking, I can’t drive. I’m socially isolated as well as physically.
Like anyone, I have up days. Sometimes, somewhat miraculously, I’m not in pain or I’m managing my pain successfully. I try to take advantage of these times, and I can be quite productive. These are the best days. However, it’s not sustainable for me at this time, and I’m more than likely to experience more pain afterward. The return of pain is always disappointing, despite its predictability.
It’s not about you. You’re great. I like/love you and I want you in my life, but if I’m in pain, I can find it hard to connect with the outside world. If I retreat, it has nothing to do with you. I want you to know that you do help. You do make my life better.
I miss my healthy self, and it’s hard to let go. Accepting chronic pain is hard. I’m constantly judging myself for not being my healthy self. Things I used to do simultaneously feel completely unachievable. I’ve not yet forgiven my body for sabotaging me. But sometimes this loss of self causes me to take on tasks I really can’t cope with. My body sabotages me, and I sabotage it.
The light on the horizon has changed. There is no cure for my pain. After a few years of trying to find a cure, it has become clear there isn’t one and I’m going to be permanently disabled by pain. Now the light at the end of the tunnel isn’t about cures but management and acceptance.
Sometimes I’m not all there. The medication I’m on is strong, and often I suffer from brain fog from it. Often the pain itself causes me to lose focus and forget things. It’s not that I’m not interested, because I am. Please understand that I feel the difference, and it saddens me. So if I forget something, forgive me, and please don’t make a big deal out of it. I’m already embarrassed by the dulling of myself.
A lot goes on behind the scenes. Trips to doctors and specialists take up a good deal of my calendar. It takes time and energy just to meet these commitments. There’s often an emotional toll as well.
I’m trying, I really am. I want more than anything to be present and living life. What I want from you is reassurance that I have the space I need to deal with my health. What I want from you is the acknowledgment that although I often cancel out from social and work opportunities, you will keep inviting me. I’m here, and I’m doing my very best.
Nadine Whitney is a cultural studies graduate who now spends her time running a boutique with her very best friend in county NSW Australia. She lives with chronic pain and bipolar disorder.
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