It’s difficult to share your story with others. It’s difficult to explain your conditions. It’s especially difficult when your conditions are invisible and you look just fine. Feeling misunderstood by others hurts. Feeling judged hurts. But I’m finding it does help to let others into your world. There are people out there who are willing to listen, who care, and who want to help if they can.
It helps to share knowledge. I do my best explaining my conditions and I have found that sharing helps with isolation. It’s easy to withdraw from the world when you don’t feel like you fit into it anymore. I have been working on connecting with others who share similar conditions. It really helps me to know that I am not alone. But even people who don’t share my conditions can still be very understanding and supportive.
I have found that it helps to let others know how you are feeling. It can be difficult to find the right balance because you don’t want to share too much and you don’t want to seem like you’re complaining all the time. This takes constant practice. I find myself venting a lot. But communicating and staying close to others helps me cope.
I have a hard time asking for help or accepting help. I’m trying to get better at that. I realize that some people are very genuine when they ask if you need help with anything like a ride to a doctor appointment. I realize that asking for help is not a sign of weakness. But at the same time I don’t want to be a burden. People are sincere when they extend help and it’s up to me to accept their offer. I’m working on it.
There is always a huge uncertainty of symptoms with me and that makes it hard to plan things. I have to let others know that I may not be able to follow through on my commitments (if I even made them in the first place). Much of the time I try not to make any plans because I never know how I’ll be feeling when the day comes around. I’m constantly having to evaluate the effect activities have on my fatigue and pain. This can make it hard to let others in because it sometimes seems easier to just isolate instead of always canceling and not being able to participate. Why bother, right? This is a bad state of mind to be in and I try not to go there. I try to do what I can.
It’s important to create a support network. In order to do that you have to let people into your world. Even though not all people respond the way you may want them to, try not to take it personally. A full life can only be lived with other people living it with us. I have to remember that I need others and others need me.