10 Tips for Living Well With Chronic Illness
I have been working at living my life transparently.
To live my life transparently means that I live my life openly, that I share what I’m going through, my ups and downs, my successes and failures, my struggles and disappointments as well as my successes and happy moments.
To live my life transparently does not mean that I am not afraid of being vulnerable, but that I am alright with sharing that vulnerability with the world. Recently I started a 101 Days Challenge in which I created a painting as well as shared a little of the background surrounding why the painting was done. Some days were painful to share, but the response received from it was worth it.
The decision to live life transparently was not easy for me. It took a long time for me to get to this point, to be ready to share. It took a long time to get past the fear of exposing myself, the fear that if people knew the truth about me, they wouldn’t want anything to do with me, if they knew how sick I really was, they wouldn’t want anything to do with me.
If you suffer from a chronic illness chances are you have seen the television movie about Toni Braxton “Toni Braxton: Unbreak My Heart”. I’ve always loved her voice, and since finding out she lives with lupus (Systemic Lupus Erythematosus) I’ve become more interested in her and life. It prompted me to wonder how open I was being about my own journey with chronic illness.
The movie was interesting because she tried to hide her illness from the public and even close family and friends for many, many years, even though the very act of hiding it brought about so much stress in her life, stress she would have been better off, and perhaps healthier, without.In one scene she goes to an event where she makes her first public speech and confession about her life with lupus.
For a long time I hesitated about sharing anything about my battle with lupus, neuropathy, arthritis or any of the other diagnoses I received for fear of being shunned, being shamed, being misunderstood.....much of which actually happened, but I have thrived despite.
I had decided that it was better to hide it than to be truly honest about it as I assumed people would consider me pathetic, attention seeking, useless and so many more negative things. This means that I rarely reached out for the support I needed (partly due to the fact that I am an extremely independent and determined person), which made my suffering more isolating and difficult, and it also means that ultimately I wasn’t being honest which prevented me from forming deep connections with people.
In the end it left me with a great deal of resentment, blaming people for not understanding, or making the effort to understand, or for not helping me, but I realized that I had not really let people know what I had been going through. How could they know? Why do I feel the need to hide my illness? It is part of me...although I pray daily for a cure. I don't want to be sick.This was never any good for my health or my life, and I see others repeating the exact same patterns and ruining their relationships in the process.
I finally stopped assuming people knew what I was going through, and made sure they knew by being open, honest and frank about my condition. After that, things changed so much for the better. I found myself with the support I needed, I had options when I needed help, suddenly my cancellations weren’t a big deal as my friends understood my reality so much better, and so many burdens were lifted.
I urge you to be upfront and honest about your conditions, particularly with those who love and care about you. Those that really care never come close to believing you're attention-seeking, pathetic or useless.