The only thing to fear is fear itself. Well, maybe. Fear and chronic illness can comingle and create what doctors refer to as ‘sick behaviors’. The fear of doing things because of the pain it will potentially, or will, cause.
Here is the thing; there was a time in my life not too long ago when my pain was unmanaged and I was an excessive hermit. Still a moderate hermit. But I was quite reclusive. People would invite me out but the idea that the suffering would get worse, or just having to deal with that pain in a social situation made me cringe. Or worrying about getting a migraine when I went out. So I went out less and less and less. Friends faded away until most were just gone.
In trying to manage my pain I have gone to pain management classes and psychologists and they all say don’t let the pain rule your life. Live your life. Fear of engaging in life because of the pain holds us back.
I wonder why though. Because a) the pain will be there regardless b) we are used to functioning in pretty high levels of pain. Why then would it stop us from moderate activities and moderate socialization. As long as we pace ourselves, have a plan and take medications with us. There is nothing to lose and a lot to gain. No loss if we have to leave early. No loss if we have to stop an activity early.
I have two examples.
Socialization: Socializing helps with our mood and decreases the pervasive sense of isolation we have. Even introverts need some social time, just not as much. With chronic pain and chronic illness, we might have to select social environments that work for us. A BBQ at someone’s house instead of a loud bar. That sort of thing. Binging with friends on Netflix over a concert.
We may turn down due to the fear the pain might get worse, that the pain will crop up due to the increased activity, worry about suddenly appearing and interfering and due to the fear not go out at all. But there will be pain whether you go or not. You have experience with pain and coping with it. You know how to cope and what not to do to make it worse. What activities and environments would trigger more pain or flares. You also travel prepared to treat any flare-up of pain. And there is simply nothing wrong with leaving early when the pain peaks to a level that is non-tolerable and non-functional. But many a time you can enjoy yourself with moderate pain. You can have a good time, have some laughs and reduce some stress. Just be you for a moment.
When your pain is a high level, of course, you wouldn’t socialize. But when it is moderate we shouldn’t let the fear of pain stop us from living our lives and connecting with those around us. It is healthy and isolating ourselves definitely isn’t. I can handle a Lot of alone time as an introvert, but I do need to get out of the house, out of my mind, every so often. As long as the socialization is pretty mellow I can handle it. I go for coffee with my mom. I play cards with my friends. We have a fire at our place with a BBQ.
Exercise: Exercise also works for an example because the fear of the pain makes us inclined to not even engage in trying exercise. Or when we feel the initial pain, we just stop. And it is a hard one for sure because I have never exercised without pain, except for just walks. And that is the clue there. Starting out slowly. With just going for short walks. To find your limit go for a walk and when you feel that edge of tired double back. That is your walk time. Slowly add to it as you go along. Try yoga and stretches. I do a stationary bike because the pain clinic wanted me doing a certain type of exercise. It is painful so I started very slow. 2min, in fact, was my max. And worked up to 20min over six months. Everyone is different though with their pain and exercise intolerance.
The fear tells us that it will always hurt. That it won’t have any benefit. That we simply cannot do it because of the pain. The fact is they don’t want us to lift weights for an hour or run a marathon… they want us to move. Mild exercise counts. When you exercise and you hit that alarm of pain, that is when you know you have hit the point to stop. You keep pushing to that alarm zone… and never farther than that… because too much will flare your pain for sure and we explicitly want to avoid that. So we want to just nudge that alarm but never pass it.
We know pain. We know our bodies. If it flares up from what you do. Do less. If you cannot do one thing, try something else. Find something that works for you. And increase by very small increments unless it is comfortable for you to do otherwise.
There are things we cannot do. And we know it. There are things that come with extremely painful consequences. But we don’t want to live in a framework of ‘can’t’ because we fear the possibility of pain interfering with what we want to do. It interferes with every single thing we do. We can’t let it stop us from living. Living in a different way perhaps. In our pacing, a moderated way of course. But still living our lives.
When you get invited out somewhere or to a family social event and you think ‘I can’t go’ ask yourself why you can’t go. Is it because you don’t want to? Or because you fear how your pain will behave and how you have to deal with it? And instead of thinking Can’t try thinking how would I be able to manage my pain and enjoy myself. Take a nap before I go to manage my energy? Take medication early and bring it with me? Mobility assistance tools or comfort accessories?