10 Things I Wish People Knew About Living With Chronic Pain
As of recently, I have found myself in a full-blown pain flare. I felt compelled to write an article for all of the chronic pain and chronic illness warriors out there who face comments like the ones I’ve faced all week, comments like, “You don’t really have it that bad, people have it worse” and “Why can’t you be positive?”
I want every chronic illness/pain warrior to know you are loved, valuable and important no matter what the pain or the illness portrays you as. You are not your illness. Sometimes, it can be difficult to find the people who see you through your illness. It can be difficult for other people to understand just how much pain you deal with day in and day out, and because people cannot grasp this concept, they may make inconsiderate and insensitive comments, often without even knowing.
Here are 10 things I wish people knew about living with chronic pain:
1. I may look angry, but that doesn’t mean you did something to upset me.
Living with chronic pain will absolutely frustrate a person. Having to deal with something that may not have a cure, sitting with that feeling of hopelessness has an adjustment period. I may never get over that fact. I am most likely not mad at you when you see that I look angry. It is anger towards the illness and the pain, not towards you.
2. I may “complain” about the pain.
If I am trusting you enough to “complain” about my pain to you, that shows I have a deep sense of safety with you. I do not talk about the pain I am in to a lot of people due to my fear of being told I am faking it, over-exaggerating or looking for attention. The best thing you can do for me is listen. Sometimes, I just need someone to listen and validate me.
3. I want to be there for you desperately, but sometimes I have to take care of myself first.
I have a deep need to be there for everyone, sometimes to a fault. Sometimes, I forget to put myself first. I may stay up to talk to someone who is going through their own rough patch when my fatigue and pain is begging me to take a break. If I have to tell you that we have to talk another time, it doesn’t mean I don’t care. It means I am in too much pain to give you the energy and time that you deserve.
4. I am not over-exaggerating.
This is my biggest fear when I talk about my pain. I am so scared that someone will think I am over-exaggerating what I am dealing with. This couldn’t be farther from the truth though. If I am telling you I am in a lot of pain, I am telling you the truth, and the best thing you could do for me is to validate that fact. When you tell me I am over-exaggerating, it leads me to not open up about my pain in the future and makes me feel alone.
5. Sometimes, I feel depressed.
On bad pain days, I can become depressed. I have major depressive disorder, but this worsens when my chronic pain flares. I can feel hopeless, worthless and get stuck in cycles of self-hatred.
6. I am not a “junkie” for taking pain-relieving medication.
I keep bags and bottles of pain relievers in my purse and my backpack at all times. Sometimes, in the middle of class, I take two of them when I feel pain coming on. I always have pain relievers with me, and there are some days that I would not function during the day or sleep at night without them. This does not make me addicted to drugs. Comments like these hurt and stigmatize me. Even when you are joking, it hurts me.
7. Just because I can laugh and seem “fine” does not mean I am.
I spend most of the day hiding my pain from you. I do not like others to see my struggle. I keep it secret because I do not want to hurt anyone else, but that doesn’t mean I’m not hurting. I may smile all day, make jokes, laugh hysterically and then the next moment I may be unable to stand because I feel too weak to do so. My outward appearance shows nothing about my pain.
8. I get piercings because it’s a pain I can control.
When I turn 18, I am getting my nose and daith pierced. I do what I feel will help me feel in control of my body. Please do not comment on the choices I make with body. You do not know the fight I went through to stand in front of you today, and you do not know what function the piercing (and for some, tattoos) serve. They can be incredibly healing and symbolic.
9. I am not “too young” to be in so much pain.
Chronic pain does not discriminate by age.
10. Your small gestures do not go unnoticed.
I had a friend buy me some migraine patches the other day because she knows that ice helps to relieve my migraines. A few weeks ago, my friend brought me in a tea bag so that I could make tea to soothe my stomach. These little gestures mean so much. I always notice them. Thank you for showing that you care.
If you struggle with chronic pain, remember you are not alone. You deserve relief, and you are braver than you believe. Hang in there.
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Thinkstock photo via agsandrew.