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What We Need to Remember About People Living With Chronic Pain

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I am 25 years old and I just graduated from medical school. In the last two years, I’ve probably spent more time as a patient than a medical student. While all my friends and classmates are off doing something to advance their careers, I am staying dormant and excelling at doing nothing. And more than that, I am excelling at accepting my stagnancy without guilt or remorse.

These are five things I’d like others to remember after living with chronic pain for more than two years:

1. Believe me when I say I’m surviving. You ask me what I’m doing now that I’ve graduated, and I answer with a sad smile and say “surviving,” you laugh and respond with “aren’t we all?” You believe it’s a small joke made in friendly banter. No, I truly am working on surviving. To you, tired may be the fatigue you feel following a 24-hour shift after which you fall into a deep sleep and wake up replenished.

For me, tired is what I am all the time.

Tired of being in pain.

Tired of not being able to even sleep it off.

So when I say what I’m doing is surviving, it is equivalent to a full-time job for me. A job with no pay-off. When I say surviving, I mean waking up every morning and getting out of bed is a task. I mean that I don’t brush my hair for weeks because it’s too painful. I mean that sometimes after a day of activity, I am in so much pain that I need to be helped to the bathroom and back. Surviving is my full-time job.

2. Don’t call me a drug abuser or addict just because I know when my body has had enough and have no problem in admitting I need to go to the ER for help. If I went through medical school with almost-doctors who believed that I was a drug addict, then I can’t even imagine what people not in the medical profession say about their friends and acquaintances with chronic pain. I thought that I could be open in front of my peers, that their medical training would give them empathy or at least an indifferent acceptance, but no. People get addicted to things that take their pain away. I cannot be addicted to anything — not morphine or fentanyl or oxycodone, because nothing entirely takes my pain away. Ever.

3. Teach your children not to stare. Yes, it’s strange to see a young person who has a smile on their face with a purple walking stick. It’s curious to see a young girl limping about a mall, going about life as if nothing were awry. It is, however, extremely annoying when kids and worst of all adults stare blatantly. If you must look, do it discreetly. Tell your children it’s rude to stare. I don’t mind if they come up to me and ask me why I have a walking stick, but the staring is a constant reminder that I am different while I am just trying to live my life within the constraints of what is normal to me.

4. Doctors, please listen. Please don’t have an agenda in your mind or an arrogant approach to your own treatment methods. It’s frustrating when it gets to the point where you convince yourself your treatments are working, even when the patient tells you otherwise. Just because I put makeup on my face and happen to not be limping during one appointment does not mean you shouldn’t listen to what my pain was like since the last appointment. What I’ve learned from countless trips to hospitals and countless interactions with aloof doctors and snarky nurses is exactly what not to do if I am ever fit enough to practice medicine. Nurses, if you think a patient comes to the ER too often or is “faking it” despite objective evidence of distress/pain, keep it to yourself. It’s the doctor’s job to determine and since you are the first person the patient will see, the last thing he/she needs is your rude comments and your questions such as “are you really in pain?” or “let her wait for a bed.” Your training has taught you to be empathetic and caring, not to be dismissive and vicious.

5. Love me. Please, love me as I am now. I may not be who I was, but my soul is still the same as the one that belonged to the pre-morbid version of me. I am still evolving, trying to fit into this new shell while still fit in with the “normal” crowd. Please don’t take it personally if I cancel plans repeatedly because I’m in too much pain. Please don’t lose patience when I vent and complain and post about chronic pain all the time because to me the outlet is either outwards or inwards and I have enough pain inwards to last me a lifetime. Please don’t push me past my limits. But please don’t smother me either. My capacity for loving hasn’t changed one bit even though I might be cranky and irritable. Above all, give me hope. Give me hope for a better tomorrow by being a part of it. My health may or may not improve, but your support and love will take me further than any medications or treatments ever could. Please, love me.

Originally published: August 4, 2016
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