Tension myositis syndrome (TMS), also called the mind-body syndrome, takes a lot from you. Not only does it impact your body by giving you immense pain and suffering, but it can also negatively impact your relationship with others. Realistically, not everyone can understand what you’re going through — they simply don’t have the first-hand experience to build up the TMS-specific empathy needed.

To help you deal with reactions from loved ones — whether they are trying to be supportive but failing or being intentionally abrasive — I’ve compiled a guide to help you know what to say when the people in your life are less than supportive and you’re struggling with such immense chronic pain.

It Might Not Be About You

As much as a sharp retort or seemingly hurtful comment may bite, sometimes it is useful to take a step back and really look at the situation. You’re in terrible, often times debilitating pain — why would they want to make you feel worse? Often, negative comments come from a place of their own insecurities and it may not be about you at all. Those who truly love life don’t usually cause others pain.

Try and think if they’re having a hard time in their own life. Maybe they are taking it out on you. Although nothing makes hurtful comments acceptable, understand that it really may not have anything to do with you. This way of thinking can help you reframe the situation away from being defensive and hurt to practicing empathy for others and getting the negative thoughts away from you. In this instance, try talking about the other person’s stress or worries. You might help them, which would, in turn, help you.

Stand Up for Yourself

That being said, if someone is being deliberately hurtful towards you and your disorder for an extended period of time, then you need to stand up for yourself no matter who they are. Just because they are our loved ones, friends, acquaintances and so on does not give them the right to demean us or diagnose us.

I’m a huge fan of talk back, which I use to speak with my own mind and take control. Use this superpower you’ve developed from dealing with your TMS. Use the talkback method in order to talk back to people who may be hurting you. Don’t let them tell you that you’re attention-seeking. Don’t listen if they doubt your methods. Don’t listen if they assert they know what is best for you. Stand up for your own right to self-care. Stand up for your right to a pain-free life.

Be Open, Honest and Confident

You’re probably in a lot of pain. The last thing you want to do is lie about your situation in order to make others feel better. Just be open and honest. No matter what they may say, just be your authentic self. Answer their questions one by one, with calm confidence.

People are much more likely to be open to a new idea if it is presented to them calmly and confidently. While you definitely won’t win over everyone you speak to, everyone does appreciate having things explained to them in a respectful way. This goes both ways. If they are being disrespectful or demeaning you in any way, you have every right to call them on it or walk away.

Also, it bears noting that this entire process of calm explanation may well be infuriating for you — the chronic pain sufferer currently living with TMS. Whether you have no pain or are on your journey to a pain-free life, just be open, honest and confidently you, no matter how hard it may be. You can do it!

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