Do you ever feel like you are in an episode of The Walking Dead? One where Rick goes out on a supply run. You are out in the wilderness, wandering, hoping to find what you need, or someone to help you or your loved ones? Or maybe just someone to talk to? You are in search of something life changing, but you are finding nothing around each turn. Sometimes it’s worse than finding nothing – there are more monsters around that corner.
Those feelings are how it goes when you, or a loved one or child, have a chronic illness. You want to know why this is happening to yourself or your loved one? How come there aren’t any professionals who can provide you with answers? Where is the doctor who is supposed to help you? Or maybe even the question, how can I seem to know more than all the physicians we have seen?
This week all these things came flooding back to me reminding me how important it is to have a support system and people to talk to. I have been corresponding with the founder of the Website Lies About Parenting. It’s an awesome site that shares articles by real parents about the truth of being a parent; helping parents feel connected to each other.
It just happened mine and Bubba’s story hit home when I shared it with her. Her family is seeking answers about a possible PFAPA diagnosis, or another diagnosis, for symptoms affecting her young daughter. After several correspondences, we both expressed our relief at talking to someone else who knows what we are going through.
The National Institutes of Health recommends seeking out support groups, and other individuals with chronic illness or the same illness. Finding these people will help you realize they too have felt the fear, isolation, exhaustion and more. It might not be easy to find a group or others with your illness. Looking locally as well as online groups are some options.
If you have a rare/hardly talked about illness (like my Bubba), it’s a long road finding others to share with. I started writing about our disorders to share, and maybe find others like us. Finding friends and family that understand, and can be sympathetic and helpful, are the next best thing.
Talking about your illness is so important, but also very difficult to do. For myself, I try to focus on living my life actively and to it’s fullest potential, so I try not to focus on my illness at all. It then becomes the last topic I discuss with people. However, I have found the more I share about it, the more people I can help through my experience. Feelings of fear and misunderstanding of your illness go along with feelings of not wanting to share. Autoimmune disorders are unusual and are hard for ourselves, much fewer others to understand.
Sharing with caring friends and family, and finding someone to talk to at just the right time can be incredibly helpful in your journey to balance.
What works for you?