Sunday, July 16, 2017

How one looks is not a measure for how one feels

Human beings are visual creatures, so we often associate how one feels based on how they look and act. Sadly, this is very short sighted. Many people live with life altering conditions such as chronic pain, dystonia, cancer, multiple sclerosis, diabetes, etc., with no visible symptoms at all to the naked eye. We also can't see anxiety, depression, dementia, PTSD, etc., which can be be crippling, so we should never base any conclusions about how someone feels on their appearance.

For many years, I lived with very visible symptoms of cervical dystonia and intense chronic pain where I could barely function, as well as morbid obesity. I also dealt with debilitating anxiety and depression. After losing 150 pounds (see before and after below) and learning to better manage my dystonia and chronic pain symptoms, I look normal so most people wrongfully think I am cured.



In actuality, I still live with pain and muscle contractions, awkward postures from muscles involuntarily pulling me off center, fatigue, etc. It is just not as visible as it used to be, but that doesn't mean I don't feel like someone is strangling me most of the time and my muscle contractions make me want to fall on the floor. Unfortunately, people can't see it so people often don't believe it.

This is the case for many people who are living with chronic health conditions. Many symptoms are completely invisible. Granted, dystonia is one that is often visible, but I know countless people with dystonia who have brutal symptoms that do not manifest physically. As a result, it is hard to diagnose and it is hard for people to believe them when they explain how they feel. People think it is all in our head, we are lazy, looking for attention, and so many other thoughtless judgments.

Sadly though, we all judge and compare. We do it with relationships, financial status, social life, possessions, and countless other things. Some people even compare their health with others. I used to compare my dystonia (and most of my life for that matter) with people all the time.

When I was experiencing the worst of my dystonia symptoms, in my mind, if someone didn’t look as bad as me then there was no way they could feel as bad as me. How wrong I was and shame on me!! Appearance means nothing. I know people with very difficult looking symptoms that have little to no pain and are very functional, others with no visible symptoms and in terrible pain, unable to do much of anything, and of course many people in between. How one looks is not a measure for how one feels!



When times were really tough for me, it was hard to reconcile hearing people say things like, “I can’t take it anymore”; “I wish I were never born”; “The pain is more than I can handle.” When I said these things it was usually just a way of describing to others how sick I felt, but there were plenty of times I really felt this way.

When I heard others use these same words while they were still working, travelling, running, hiking, playing tennis and golf, etc., going to social functions, and living what appeared to be a pretty normal life, while I was literally living on my floor because I was in too much pain to sit or stand, I was infuriated. For years, just walking to the bathroom from bed was a major undertaking. I couldn’t fathom doing all the other things.

It took me a long time to realize that I was being unfair because we only know what we know. Our reality is unique to us, so for a person who we perceive as having “mild” symptoms, it might be far worse than we think and/or to them it might be the worst thing they ever experienced.



People also have different pain thresholds, attitudes, and coping skills. Thus, their words ring true for them. They can describe themselves however they want and be involved in whatever activities they choose. We are not in their shoes so we don’t know what they are experiencing. Quite frankly, it is none of our business.

Just because someone else, whether they have a limiting health condition or not, might be able to do things you can’t or find uncomfortable does not make you any less of a person. There may be things you can do with ease where others struggle. Either way, it doesn’t matter. You have many great qualities and everyone in your life should focus on the strengths that exist and the accomplishments YOU achieve every day. Our time is better spent doing all we can to feel as well as we can, instead of comparing ourselves with others and trying to understand and figure out someone else’s life.



Tom Seaman is a chronic pain and dystonia awareness advocate, and author of the book, Diagnosis Dystonia: Navigating the Journey, a comprehensive resource for anyone living with any life challenge. He is also a Certified Professional Life Coach in the area of health and wellness. Tom volunteers for the Dystonia Medical Research Foundation (DMRF) as a support group leader and WEGO Health as a Patient Expert panelist. To learn more about Tom and get a copy of his book, visit www.diagnosisdystonia.com. Follow him on Twitter @Dystoniabook1

http://www.diagnosisdystonia.com/

5 comments:

  1. Very well said. I experience similar misconceptions (I have Multiple Sclerosis). I may look fine on the outside but that doesn't mean I have no dificulty doing everyday things. I have also become more aware that plenty of people have similar or worse struggles tham me. Don't judge other people.

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    1. Thank you very much and thank you for sharing your experiences. MS is another one that can be so disabling, yet most people would never know a person had it. I'm glad you mentioned it so I could add it to the list of conditions in the first paragraph. Like you, I do my best to be as aware as I can of others and their struggles. There are so many people I meet who are living with something I would know nothing about if they didn't tell me.

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  2. Much like your book, this has such a sincere, simply stated truth to it, and your compassion as a person comes through. Wise words.

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    1. Thank you so much! I work to be as genuine as possible so to get that kind of feedback really means a lot!!

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