Please don’t judge how someone feels based on appearance
If you have a health condition where you are misunderstood and perhaps judged by others for how you live your life to battle your symptoms, I invite you to read a wonderful story called The Spoon Theory by Christine Miserandino, a woman with lupus. A friend asked her what it felt like to have lupus and she described it in a very clever way, which became famously known as The Spoon Theory. It is very similar to what I experience with dystonia, a painful neurological movement disorder. We could replace lupus with dystonia or most any chronic health condition in the The Spoon Theory story and it would parallel many of our lives.
Although her lupus symptoms are noticeable to others, Christine also has fibromyalgia, Sjogrens Syndrome, and Reynaud’s disease, symptoms of which are pretty much invisible to the naked eye. Being the visual creatures that we are, if we don’t see something that looks wrong, we assume a person is healthy.
When my Mom had breast cancer almost 10 years ago, if you didn’t know it you wouldn’t think anything was wrong with her. She looked just as healthy the day before her diagnosis as she did right after her diagnosis. She just had something inside her that no one could see with the naked eye so she appeared to have nothing wrong. Tests proved otherwise and thankfully she was successfully treated and cancer free ever since.
However, unlike other conditions people are not as familiar with, like dystonia, no one ever questions a cancer diagnosis or judges the person who has it. They not only accept it, they do so with great compassion, as they should. With chronic pain, movement disorders, autoimmune conditions, etc., we are often challenged by people who question the validity of our condition, sometimes to the point of shaming us.
For years, my dystonia symptoms were such that it was obvious that something was wrong because my neck was locked in position towards my right shoulder due to constant, severe, involuntary muscle contractions as you can see below.
As I worked to improve my condition over the years, my symptoms became less obvious to where you can barely notice them anymore (see far right photo above and check out my video called Living well with Dystonia). However, just because my body looks better now does not mean that I am symptom free. A lot of people seem to think that since I often look fine I must feel fine because it is hard to believe something exists when we can’t see it.
Just because you can’t see it, I am not without pain, muscle contractions, dizziness, headaches, or fatigue. Granted, everything is less severe than it once was, but it still exists to varying degrees. This is the case for many people with dystonia, chronic pain, and other conditions.
On occasion my symptoms will get bad enough where I have to do nothing all day but rest, often on heat or ice, and use one my many self-help pain tools. Most people don’t see me when I am like this so their opinion of me is somewhat skewed. When I am having symptoms in public, most people don’t notice. I have become so used to them that I am able to hide them and appear quite normal, despite feeling quite uncomfortable.
Because people often don’t understand what it’s like to live with a chronic condition (most people are accustomed to getting sick and recovering in a short time) or think how we look is an indication of how we feel, we often hear thoughtless comments. Here are a few:
“It’s all in your head.”
“You’re just having a bad day.”
“Everybody gets tired.”
“You’re just depressed.”
“You’ll just have to tough it out.”
“If you would just get out more.”
“There are people worse off than you.”
“It can’t be that bad.”
“If you would just exercise more.”
While I truly believe that people are well intended, these opinions and comments often miss the mark when it comes to what we are experiencing. I wish people would be more sensitive and instead say something like, “I hope you feel as good as you look.” More important than anything though is how we process these comments.
We have to understand that unless someone lives with a chronic health condition, they probably have no idea what it is like. They can only relate it some short-lived pain or other problem that went away or doesn’t disable them like dystonia and other conditions do for so many people. This is not a fair comparison, but for the sake of our health, we need to understand this and be very careful how much we let the opinion of others bother us. As we all know, any added stress can make our symptoms worse. Please be mindful of this the next time someone launches a thoughtless remark in your direction. They just don’t understand and we must learn to be okay with this reality.
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Tom Seaman is a Certified Professional Life Coach in the area of health and wellness, and the author of 2 books: Diagnosis Dystonia: Navigating the Journey (2015) and Beyond Pain and Suffering: Adapting to Adversity and Life Challenges (2021). He is also a motivational speaker, chronic pain and dystonia awareness advocate, health blogger, volunteer for the Dystonia Medical Research Foundation (DMRF) as a support group leader, and is a member and writer for Chronic Illness Bloggers Network, The Mighty, Patient Worthy, and The Wellness Universe. To learn more about Tom, get a copy of his books (also on Amazon), or schedule a free life coaching consult, visit www.tomseamancoaching.com. Follow him on Twitter @Dystoniabook1 and Instagram.
You’re exactly right. People do not yet get what dystonia is and how painful it can be and most times you can’t be bothered trying to explain.
I am always grateful for the people who want to listen and learn 🙂
Thanks Tom, your article is so true. I dont know how many times I hear “you look okay” when I say I’m not up to something and my body is screaming with pain. I try so hard to keep my face from scrunching up I end up with headaches.
No I’m not in a bad mood…this is just my face. Yes, I’d like to smile, thanks for telling me…?
Hi Susanna- I have heard to same thing many times also. Sometimes I ask… “so how is a person in pain supposed to look?” People don’t know what to say, but they know what to say when I talk about my pain, which is sometimes, “please stop talking about it.” Actually, I don’t get that anymore because people are far more understanding than when it all started, but there was a time when I was very much judged for talking about how I felt. I just needed a shoulder to lean on so I didn’t feel so alone because hiding it hurt more.
Excellent article. I can so relate to the part where you spoke about masking your symptoms when you’re in public. I do that all the time., especially when I’m talking one on one. I work so hard at looking normal that it ends up costing me more pain afterward. It’s also hard to concentrate on the conversation when I’m so consumed with the twisting and turning and pain. My take away is to be mindful of not worrying about what others think because they haven’t walked in my shoes.
Thank you, Sandie. I am so glad you said that about how it makes things worse trying to hide the symptoms. As uncomfortable as it may be to show them, it often takes more work to hide them and the additional tensing of muscles weakens the ones trying to compensate for the dystonia pull. I think if we can learn to let go, let the symptoms do what they want, not fight them, learn to be comfortable with what we find uncomfortable, most if not all of our anxiety goes away and we become comfortable in most any situation. How we look no longer matters, especially when we realize that we often care far more than others how we look.
I totally relate! People see me dancing around and might think…why can she do that and then have trouble stirring a pot? But because Dystonia is Neurological and a movement disorder it doesn’t make much sense sometimes. Also, often, when I’m feeling good, I will push myself beyond my limits- but there is always payback pain. Payback (for me) looks like increased spasms, limited movements, pain, and sometimes fighting regret and self-pity with support, meditation, positivity, and helping others! People do not always see the other side of what making the best of living with this condition looks like. I appreciate this article and appreciate YOU, Tom, all the time!!!
I appreciate your kind words very much! I can relate so much to what you said. I experience so many of the same things. I think that is what makes it so tough for others to understand. It can be tough for us to understand sometimes also. One moment at a time, one day at a time, doing the best we can and trying to love every minute of it, especially appreciating and taking advantage of those good hours in the day. I cherish them much more now than I ever did because I know how it feels to really be down and out.
You are so right Tom – it is very easy to be judgemental when you think you know another person’s story, but what people fail to realise is that they really only know a fragment of it. How many of us spoonies just aren’t seen on bad days? I know that I can struggle to sit upright let alone go out for a coffee…..but on the days when I can get out, a slash of red lippie that literally paints a smile on my face will mask the chronic nerve pain and fatigue that is with me constantly. My pain relief is implanted against my spinal cord – so no that can’t be seen either, but I accept that it is me who sets the pace and my parameters not others. Not always easy to remember this though when being told how well you look on one of those days when you feel like crap and pain is singing through your whole body is it? Thanks for a great post, as always, and for reminding us that we are not alone!
Thank you, Claire. That was so well said about what I would guess is the way so many of us with chronic pain live. On those days you mentioned where people comment on how well we look, which is of course always appreciated, the assumption made can often be, “they look pretty good today so they must be healing or cured now,” which as we know is not reality.
Very well said Tom and totally on spot. I want people to see me at my best and the way I used to be. I’m so grateful that that the good days out way the not so good ones. DBS has been a God send for me, however, it is not for everyone. People tell me all the time they would never know anything was wrong with me. I think of it as a way to just keep spreading awareness. So many people have never even heard of dystonia. Your book and blogs are so inspirational. Keep it up my friend!
Thank you very much, Cecily. You do a great job spreading awareness and I am so glad that you choose to do that. Some people are not comfortable talking about it or drawing attention to themselves. I like talking about it and see it as a responsibility we have to help ourselves and others. If we don’t talk about it who will? That is how I like to look at it. Thanks so much for your very kind words. You are always a source of strength and support, for which I and so many others are grateful!
I just love this Tom. It’s spot on!
Thank you! I’m glad you like it.
After 27 years of having dystonia it’s got no better I do get some relief as soon as the needle goes in. But still very much in pain. It’s like a work out. I get pain, feel tired. But have learned to live with it. I often wonder what it would be like to wake up pain free. But I know that won’t happen.. I now have a tremor and it’s that that really gets me down. What can you do. Nothing I’ve learned to live with it. And people think I’m ok. I’m not lol. I just get on with it .
I’m sorry that you have not seen any improvement. The way you describe it like a workout is so accurate. I sometimes describe it to people as a workout without going to the gym. Despite the lack of relief, I very much appreciate your attitude.
I have multiple chronic illnesses, including Dystonia and DISH. I’m in a few *support* groups and even within them, “it could be worse” is a very common comment. Comparison is a horrible way to respond to someone in distress. It’s invalidating, shaming, and inevitably leads to thinking “it could be better”.
Thanks, Tom.
Hi Barb. I couldn’t agree more. I have experienced the same within group of people who have the same ailment as me. The comparison game is never helpful. I call it a “comparathon”, which does everything you mentioned and then some. Thanks for putting it so succinctly.
It’s hard to not let other peoples’ Opinions get to you. I wouldn’t wish Dystonia on my worst enemy but I have met a few that i would like to zap with Dystonia for about a week ?. I agree with your post though. We simply cannot allow others who are ill informed to have an impact on our day. As our daughters soccer coaches used to say to her and her team mates — shake it off — when their opponent would shoulder them or trip them. Thanks for all you do for us with the big d word.
Hi Linda. I agree. It is very hard to not let people get to us. No doubt about it. There are a few people I would like to have in my shoes for a day or even just a few hours, just so I am better understood. Shake it off, as your daughter’s coach says, is also very hard, but I think a very important lesson for us to put to practice. People will have opinions of us no matter what and we have to do our best to remember that they simply don’t understand, and sometimes it is a projection of their own issues. It is more their issue than ours, unless we allow them to get to us.