For many of us, the holidays signify a time to spend with family and friends, catching up on missed time and sharing parts of our lives with those we may not see often. But, what if what you need to share is your experience with tension myositis syndrome (TMS)? What if you want to discuss your chronic pain journey? Should you share when the topic may dampen the upbeat atmosphere? What is the best way to tell family and friends about your TMS journey? Or, perhaps it’s a big celebration and telling that many people at once seems daunting.

I’ve been where you are. I want to help you tell your loved ones about your truth, about your TMS journey. It’s possible to share what has been happening in your life without being seen as negative. It’s possible to be open and honest when asked that holiday question, “So, how’ve you been?” or “What have you been up to?” It’s possible. Here’s how:

The Question

Just like many social interactions, often coming up with an answer that people will understand, process and engage with is a matter of understanding their question. We all know that when people say, “How are you?” often they don’t really want a full in-depth answer. The common response would be to say “Fine, you?” To which they answer, “Fine,” and the matter is closed.

While that may be okay for the beginning of a gathering, when everyone is streaming into the house or restaurant, that rote back and forth can certainly be changed later. Once everyone is more settled, having exchanged the beginning pleasantries, then you will probably have better luck.

At that time, when a loved one asks, “What have you been doing?” or “What have you been up to?” then you can engage with them.

Do You Really Want to Know?

When someone asks how I’ve been, I’ll ask them “Do you really want to know?” Often, it takes them a few seconds to realize I’m not going to just say “Fine” like everyone normally would. At this point they can choose to say yes or no. The good news is that almost always people say something like “Of course, tell me,” or “Sure, I really want to know.” This means that you can then discuss TMS openly.

What You Should Say

Start with the basics. Many people may not know what TMS is at all. Before throwing around big words, ask them simple questions so they can link things in their mind as you go along. For instance, this is how I might lead the conversation:

  • Have you heard of chronic pain? à Yes, I have a form of chronic pain. I have extreme pain in my lower back, abdomen, pelvic region and legs.
  • Have you heard of psychosomatic disorders before? à Essentially, they are disorders where the mind impacts how the body feels. For instance, my brain often tells my body it is experiencing pain even though nothing is physically wrong with my back or legs.
  • Why do you think the brain does this? à Actually, some people store painful memories in their subconscious mind. It means that we may not even be aware of it. It’s like a tiny man in the brain who puts bad memories in a “Do Not Open” box. The box can stay in the forgotten parts of your mind for years, even decades. Then, when that person has a lot of stress, the tiny man is worried that you will open that box. So, the tiny man tells your brain to distract you so you don’t relive the bad memory.
  • Can you guess what the distraction is? à Yes, that’s right. Chronic pain. So, that’s how I’ve been. Living and dealing with my chronic pain given to me by my mind. I’m okay, I’m going to overcome it, some days are just harder than others. Thank you for asking and listening.

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