By: Ellen Lenox Smith

So many coping with an invisible chronic condition not only have to face how to adjust to pain and disability but also how to cope with the judgmental comments we experience. “Gee, you look fine; Go take a walk; Stop stressing; What a whiner;” etc.

I have not met a person living with my condition, Ehlers-Danlos syndrome, that can’t share experiences receiving these judgments – from medical staff to neighbors, friends, and even our own families. Unless we have a brace, cast, or are using a walker, cane, or wheelchair, we can look so normal to others and that means some think that we are fine and it’s in our heads.

As we hold on to the hurt this causes, it makes it hard to figure out how to deal with those friends and family. Do you stop right there and say something to them? Or do you let it fester internally and rock the relationship you thought you had? It sounds easy to just say tell them how it feels, but most of us already feel like damaged goods learning to accept and live with pain and the life changes that arise with chronic conditions. It can be beyond our imagination to understand how someone you care about can then doubt you. But we know it happens, and we are the ones left trying to decide how to approach it.

Forgiving and moving forward make a huge difference. But how do you do that? As you live with uncertainty, pain, and disease progression, you are already on overload. But if we can find a way in our heart to educate that person so they can understand and you can forgive them, it can be very cleansing and healing. But it takes courage, too. And, not all will be receptive to better understanding your health.

I let an experience of judgment go on for years, just not knowing how to address it or feeling willing to discuss how I felt or what I could do to let this go. But when a doctor helped me confront the hurt and helped me learn to forgive and let go, I was able to focus on the good left in that relationship and feel more comfortable around that person. And, I actually believe it helped my health, too. To take control of your emotions is a gift worth learning to take on.

You may think: People have harmed us… and I am suggesting forgiving? But I have just felt that living with hurt and anger is not a helpful way to cope with life. So, yes, learning to forgive does help. I never confronted that person for the hurt they caused was so judgmental and personal. Instead, I have lived life trying to show them I was not a phony, that my condition was real, and just hoped in time they wished they could eat their words and actions taken before. Do they regret their actions? I guess I won’t find that out, for it has not been discussed, but I also have not heard that judgment again, at least not to my face! So, maybe we did make progress through the years.

Living with a chronic, painful medical condition certainly presents its challenges and the last thing we expect is to get judgmental comments from those we think care about us. But it happens, especially when living with an invisible condition. I think the main thing I don’t want is to become vindictive and wish for them to experience what I go through. I really hate when I learn of one more person facing this condition and am not willing to wish this on anyone, even if they have hurt me.

How do you deal with doubt and judgment from others?

May life keep you safe and be kind to you.

About Ellen Lenox Smith:

Ellen Lenox Smith has emerged as a leading voice for patients living with pain. Featured in local and national press accounts, Ellen brings a reasoned and compassionate perspective to the need for safe patient access to effective therapies, especially medical cannabis. 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 also serves on the Rhode Island Patient Advocacy Coalition as secretary, was appointed by the governor to the Adaptive Telephone Equipment Loan Program, and is part of the Oversight Committee for the Compassion Centers in RI. 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.