Hi there - I've been thinking about your question and it is a good one. It presents both a challenge and a goal. Here's why:

At the PRC (Mayo's Pain Rehabilitation Center) we learn about "Pain Behaviors". Dr. Sletten teaches that pain behaviors are anything one does, thinks or says that reminds themselves and others of their symptoms. It's called "accessing the network". It makes pretty good sense when you think about it. Why would we want to remind ourselves of our symptoms when in doing so we access our brain's pathways which in turn stirs up symptoms more.

The goal is to reduce or eliminate pain behaviors. Think about how difficult that is to do. Has anyone ever tried to get through a whole day without talking about, thinking about or acting out their symptoms? It's nuts! It took me time, practice, repetition, reminders, distraction, positive self-talk and accountability, but it's worked. I've retrained myself and my brain (neuroplasticity) to be less reactive to symptoms. Reducing pain behaviors has helped re-shift my focus. An example is that my body throws tantrums, like a child, and I do my best to ignore and not reward them by giving attention. In time symptoms can become less predominant. Reducing pain behaviors also took reminders from my loved ones, as they too reduced theirs in order to help me, and basically ignored my talking or acting out, which made me feel mad and sad in the beginning, but I eventually got over that.

So your question presents...how do we let people know we prefer to not be touched? The goal is to accomplish this without making it into a pain behavior by drawing attention to ourselves and our symptoms. I have the same problem as you. Sometimes we just cant ignore things and need to address them, but by doing so quickly and minimally puts us in the best place to move on. Letting people know one time that either you prefer not to be touched (you know the whole personal space thing) and not making it about your condition, or be brief in letting each person know one time only (unless they're like my Dad and forget - haha) that you are not physically comfortable being touched or prefer to be touched lightly, whatever the case may be.

How can you accomplish this goal to protect yourself without drawing attention to yourself and create pain behaviors?