By: Ellen Lenox Smith

I would like to make some suggestions for the doctors and nurses out there that are frequently meeting complicated patients like me.  I hope you consider these suggestions so you can better learn how to help us. None of us asked for these conditions that are inflicting our lives, and we desperately need more of you to take us seriously, not add to us feeling so alone. Take an interest in trying to help us!

• Do no harm. If you aren’t aware of the condition being presented to you, please be honest and suggest who might be able to help. We understand you are human and can’t know everything.
• If you don’t live with chronic pain, please stop your judgment. So many have to deal with the belief that we are just “drug seekers.” It is sick that so many patients are being left out to dry on their own. And people wonder why so many give up and turn to suicide?
• Stop commenting that “we look fine,” and that we must be making this up. Do you realize how many of us are coping with an “invisible condition?” Just because a brace or wheelchair isn’t present, doesn’t mean that life is flowing easily.
• Listen to your patient. We are real, we are overwhelmed, and we need compassion, suggestions, and any help you can offer.
• Establish appointments that offer extra time for more medically complicated patients. Of course, we take more of your time up, but please stop looking at your watch and focus on your patient.
• Listen to a caregiver that is with the patient, especially when the patient is not able to respond. Respect their words. There is a reason this person was with that patient- to be their spokesperson, especially when they can’t advocate for themselves.
• Stop judgmental comments that hurt deeply. We are human and need your compassion, not insensitive comments.
• And have you considered that many have issues with metabolizing both foods and medications? Please consider having them do a drug sensitivity test or a good sensitivity blood test. Believe it or not, many weird symptoms can be aggravated by these reactions that cause inflammation.
• Yes, we are back again – not seeking drugs, not to waste your time, but to get help. Please listen and understand instead of acting like “here we go again.”

If you have not had to face a chronic painful condition, consider yourself lucky. Many of us are not that lucky. We are attempting to learn to accept and live with pain, loss of careers, judgment, loneliness, hopelessness, etc. We all have stories of judgment from friends and even family who just don’t believe our situation is real. Yes, there are attention seekers, most of us don’t fit into that category but have to live with that judgment anyway. You have no idea what taking the time to listen to us means. Many of us have conditions that can’t be cured, but you can help us learn how to accept our new journey and possibly, ease the burdens we feel.

May life be kind to you.

Ellen Lenox Smith has emerged as a leading voice for patients living with pain. Currently, Ellen serves as Co-Director of Medical Cannabis Advocacy for U.S. Pain Foundation and is a member of its Board of Directors. She is also active with the EDS RI support group. Prior to patient advocacy, Ellen was a longtime middle school social studies teacher. She has been married for 46 years and is the proud mother of four adult children and grandmother to five grandchildren. She also is the author of two books, an organic gardener, and was previously a master swimmer and high school swim teacher.