“I understand, but I also don’t understand” – A message to everyone about chronic health issues
A few days before a recent family gathering, I had a flare up in pain and other symptoms of dystonia that prevented me from attending. One of my relatives compassionately said to another relative, “I understand, but at the same time I don’t understand.” Knowing my family and how they feel about me, what I believe she was saying was, “I understand why he can’t be here, but I don’t understand his health condition and why it is so unpredictable and he has to suffer so much.”
I was rather touched by this comment, and at the same time I realized that so few people understand what we go through when living with a chronic health condition. Even people that are very close to me that I have talked to at length about it. It’s just REALLY hard to get!
It would be like me trying to understand what it felt like to be a parent without ever having children of my own. I can relate a little bit when I think of how I have felt as an uncle, but I can’t relate to the intensely, beautiful, amazing, innate love a parent feels, no matter how many stories I hear about it or observe the behavior of parents. I understand but I don’t understand because I can’t.
It would also be like trying to understand what it’s like giving birth, something I will never be able to understand no matter how many times I hear women describe it. For a more relatable example, I will never know what it is like to see a polar bear in the wild in Alaska without ever having been to Alaska, no matter how many times I see pictures, watch nature shows, or hear stories of those who have been there to see them in person.
The main reason it is so hard for others to understand our health challenges is because everyone gets sick and injured and almost always has an expected time of recovery. When you live with something chronic as I do, there is no expected time of recovery (click here to see my article, You can’t fix dystonia with a cast) and some days will be better than others and sometimes we may have several days that are good and several days that are really rough. We may also have good parts of one day and bad parts of the same day.
This makes it really unpredictable to know what may go right or wrong with us on a particular day and how much we can tolerate and handle without feeling even more sick or in pain. Sometimes it gets to be so bad that we have to fully remove yourself from everything in order to recover, which was the case for me recently.
My day is carefully planned so I can be as functional as possible (click here to see my typical day blog). However, nobody sees all the things that I need to do in order to be as functional as possible, but that still wouldn’t matter. Even those who see most of what I need to do still don’t really understand why it is that I might be doing well one day and not so great the next day. Or well in this moment and the next moment feel awful. Or what those good or bad days actually feel like. I often don’t understand it. I just understand what I can and cannot comfortably tolerate any given day. By the same token, I can’t feel what anyone else feels either. I can relate, but I will never know exactly what it feels like, and neither can you. It’s just reality.
People also don’t understand why it is so exciting for me to be able to do something as mundane as going to the grocery store or something similar. There was a time when I was so sick that I couldn’t. Now I love to go, and other places, simply because I can!! Not because I like to shop, but because I can. It’s that simple. I took these things for granted before I got sick with dystonia.
Most of us take our abilities for granted, even those of us who are limited. It’s human nature to forget the amazing things our mind and body can do, even when it is not functioning well. Please click here to read my other blog about not taking things for granted.
When I was writing this, I was trying to think of something that would be relatable if you don’t deal with something chronic. Think back to a time when you had a headache or a stomachache where you did not feel well enough to go to a social event, out to dinner, work, etc. Now imagine that you are never without some level of a headache or stomachache every single day, and sometimes they get worse than the traditional headache or stomachache and you have no idea when it’s going to happen, and they sometimes get so bad that you are unable to take advantage of everything you normally do.
This is kind of what it’s like living with a chronic health condition like dystonia, especially if you also have pain. Our very compromised nervous system is challenged constantly to such a degree that sometimes it goes a little haywire and sends us beyond that which is comfortable to do anything at all. It’s very hard to explain and understand. However, I will say this…
Most of us with a chronic condition have learned to cope with very uncomfortable symptoms where we go out and about and do things because we have become so used to it, whereas other people would likely take the same situation and probably stay in bed because to them it is more intense because it happens so rarely and they are not used to it. We are, but when it gets really bad, we need to retreat, rest, and recover.
This all being said, we must accept that most people will never fully understand us no matter how much we talk about our health or share with them what our days are like. The only thing we can ask for is that they are understandING that we have challenges and that they love us through it. I hope that you have people in your life that are this thoughtful and caring. If not, you have me, because I get it!
I would like to end this with a quote from a friend:
The best understanding we will ever have is that we will never be fully understood…and that’s okay.
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 and Beyond Pain and Suffering: Adapting to Adversity and Life Challenges. 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 volunteer writer for Chronic Illness Bloggers Network, The Mighty, Brain & Life Magazine, and Patient Worthy. 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.