My favorite definition of worry is “to afflict with mental distress or agitation,” and I particularly admire this definition because of the answer hidden within it. Who do you think is doing the “afflicting” of all of this mental pain? IT IS YOU. If a friend were causing us this much day-in-and-day-out, psychological distress, would we still be friends with him/her? Probably not! So, why do we perpetuate this nasty cycle?
Let’s be honest, none of us would be worrying if we didn’t think it served some sort of purpose, but in our current day and age, we have confused every day, mundane psychological stress from school, work, and finances with real, perceived physical threat from an animal threatening our lives in the wilderness as we hunted our prey many lifetimes ago. Our instinctual response to worry and fear, the fight or flight response, cannot distinguish between the two, and when we worry and create psychological stress, our body still perceives an actual, physical threat putting ourselves through the unnecessary physical changes of the fight or flight response. Constantly living this way can foster a breakdown of bodily functions and organs (check out Hans Selye’s General Adaptation Syndrome) and can diminish our quality of life.
A specific worry brought to my attention by a fellow RSDer is the fear of an upcoming event (that should be something to look forward to) due to (a.) the anticipation of increased pain and (b.) the uncertainty of how much pain you will actually be in once you get there and out of the comforts of your home environment.
How do we deal with this?
1. STOP WORRYING -- As my dad always says, “Worrying is wasted energy,” (energy we do not have to waste as chronic illness warriors), so stop worrying! Vent your fears on paper or to someone in your support system and lock them away for another day. Move on.
2. BE PROACTIVE – Instead of wondering what it will be like once you get there, call in advance for extra seating or whatever it is you need. Most people and establishments won’t fight you on some reasonable accommodations, and you will be able to shut the mental door on that issue until the hour of the event.
3. CHANGE YOUR MINDSET – Some things we just cannot do anymore, and instead of putting ourselves through unnecessary pain and exhaustion, it may be better to come terms with the fact that we have some limitations. You’ll know what is worth the extra pain and what isn’t. Be honest with yourself… you may be forced to pick and choose.
4. DON’T FORGET – It can be depressing constantly having to decline invitations to go here or there because of your pain, but don’t forget that there are still things you can do (no matter how small). Be grateful!
Milly, for a question like yours, it really comes down to good self-concept and confidence with yourself when you have an illness like RSD. Because our illness is invisible, we often feel like we have to explain ourselves 24/7, and that just isn't the case. Make it short and sweet. Say, "I'm sorry, but I have a progressive neurological disease that causes me a lot of pain in my legs." DONE. THE END. If you feel like you deserve that seat, you will keep it. What we feel we deserve in our lives we will create in our lives. If we don't feel worthy of keeping that seat, we will perpetually give it up. Just because you "look normal" does not mean you deserve a seat any less! Know that and believe it! Turn it into action! I AM WORTHY!