How Resilient are you Living with Rare Disease? Probably more than you Think

Having lived with chronic pain and involuntary muscle contractions from a neurological movement disorder called dystonia since 2001, I felt defeated many times. But I am still here battling every day… and so are you! This is resilience. It doesn’t matter if you do more some days than others or even stay in bed sometimes if you are not feeling well. EVERYONE has days like this. But most days you get up and live the best life you know how given the constant challenges you face.

Resilience means being able to adapt to life’s misfortunes and setbacks, which is what most of you are doing. If not yet in the way you want, I know for most of you that this is your goal, and you are trying to find a way to adapt. This is also a form of resilience and mental toughness.

We may not like where we are in life, but we make the best of it and that is what I want to honor you for. I hope you honor yourself for as well instead of kicking yourself for maybe not doing as much as you would like or were once able to do. Please click here to read my other article on this topic.

While it is very easy to be overcome by difficult circumstances in life, they don’t have to define us. Nor do we have to allow them to completely destroy us, even though at times it feels like they do. It does not mean that we have lost the battle. Part of the struggle to get our lives on track is it go through darkness with pain and sorrow and loneliness. It is during these moments that we learn to dig deep and look within for courage, and that is when we gain the most strength.

So many people I know, many of you reading this, have used your challenges with your health and other things as a way to redefine your life with more meaning and purpose than ever before. The way we do this is to choose to be better than our circumstances. I write about this in great detail in my new book, Beyond Pain and Suffering: Adapting to Adversity and Life Challenges.

It takes a special person to handle all we do, having to overcome so much pain and unexpected obstacles, and persevere every day. If we continue to get up every morning and try to make a life for ourselves to the best of our ability given our circumstances, we are doing far more than we often give ourselves credit. Acknowledge every effort! It doesn’t matter what your life was before your health condition or other challenges began. What matters is what you do with your life now, in this very moment, and everything you do to make it the best you possibly can.

I know what I am saying won’t resonate with everyone, so I want to try and put this in a different way. Some people feel less of a person or even a failure because they are not able to do things that once came so easily, or they are not contributing at work or home the way they want because of a limiting health condition. With all of this going on, why do you look at yourself as someone who is not resilient? If you are dealing with serious challenges with your health or something else, and you are still trying to do as much as you can, many of you above and beyond what your body can handle, doesn’t that demonstrate desire to live and resilience in the face of difficult times?

I had some really tough times before developing dystonia and chronic pain, but none of them were near as challenging as when dystonia took center stage. Given the challenges many of his face, I think we are actually more resilient now than we were before when our bodies were able to handle more, and if you are dealing with the emotional side of things with your health condition and you still make the best of your day and look for better ways of managing and coping, isn’t that resilience? In my opinion it certainly is and as I have mentioned several times in this article, you need to acknowledge that in yourself. Others may judge you for what you can or can’t do, or choose to do or not do, but you know the truth about your situation so you should not judge yourself for your abilities and efforts. Acknowledge yourself for everything that you ARE able to do!!

You may not have written the current chapter that you are living right now, or perhaps chapters prior to this one, but how we respond to prior and existing chapters in our lives will positively or negatively impact future chapters. Rewrite the current script of your life and use pain and other challenges to propel you. Don’t let them control you.

At the same time, say thank you for these challenges, for they teach us valuable lessons that we can use to become stronger and even more resilient than we already are. They also teach us how to not take even the smallest thing in life for granted. Personally, I appreciate life more now than I ever did. What a gift! BUT, it took me years to see it this way, and once I did, life took on a whole new outlook. I wish the very same for you but be sure to let your unique process play itself out.

During this process, I encourage you to think about a possible deeper meaning beyond your pain and suffering; that perhaps the anger many have about their life situation is making them worse; that perhaps there is another perspective, outlook, or mindset that we can adopt that will reduce the suffering. After all, the amount of stress we allow ourselves to experience will help us or hurt us. The decision is ours.

I know full well it is as not easy as I am making it sound. It is one of the hardest things ever. If you have read my story, you know that I did not do any of what I am sharing in this article for years, which is why I am sharing it. I want for you to have an easier road than the one I took to become the catalyst for choosing to make more out of life than what was handed to me. We don’t have to settle. We don’t have to be brought down. We can choose to be better, which I think most do even if it doesn’t feel like it, and again, those efforts need to be acknowledged and honored. Life is not easy. It is a short ride filled with pitfalls. Be kind and gentle with yourself as you go through it.

Tom Seaman

Tom Seaman

Tom Seaman is a Certified Professional Life Coach in the area of health and wellness, and 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 writer for Chronic Illness Bloggers Network.To learn more about Tom, get a copy of his books (also on Amazon), or schedule a free life coaching consult, visit www.tomseaman.com. Follow him on Twitter @Dystoniabook1 and Instagram.

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