LindsayI came across a couple of articles I wanted to share, as I thought they might be beneficial for us all.
Anyone who has friends who suffer from a chronic illness has likely struggled with finding the right words to say to their friend. Certainly we all want to express our sympathy and understanding and want to be careful not to inadvertently hurt our friends’ feelings while trying to express our sympathy. I have many friends with chronic illnesses, both dysautonomia and other conditions, and am certainly guilty of saying the wrong thing.
Fortunately, author Toni Bernhard wrote an article about what chronic illness sufferers do not want you to say. Ms. Bernhard is a former attorney who acquired a chronic illness while traveling in Paris. Among other conditions, she also suffers from dysautonomia. She wrote a fantastic book called How to Be Sick, which I will discuss in a future post.
Ms. Bernhard’s article contains a list of what NOT to say. I am guilty of saying some of the things listed in Ms. Bernhard’s article at one time or another, but her advice rings true for what most chronic sufferers I have spoken to would not like to hear. Our friends know we mean well and may not always have the right words. They overlook our missteps because they know we love them. But imagine how much better our communications could be if we were able to say the right thing. You can read Ms. Bernhard’s article here.
Toni Bernhard also wrote an article about what those suffering from chronic illness would like to hear, which you can read here.
While both articles contain great suggestions as to what to/not to say, you can probably never go wrong with just letting your loved one know you care. Honestly, just acknowledging your friend and asking how s/he is feeling is more than most people do.
“How can something so simple as general conversation mean much more than general conversation?” – Nelly
Stay tuned.
– L
I am a teenager with POTS, and I hear a lot of complaints and comments at school that bug me, but one of the worst things you can say to me is “I’m so tired you can’t even understand,” or “my (fill in POTS symptom/pain here) is so terrible I can’t stand it!” I try not to focus on my pain and symptoms, but constant whining and complaining doesn’t exactly help! I also had to stop playing soccer which I had played from age 4-14. A lot of days I hear “I don’t want to go to practice!” these comments usually leave me speechless. It makes me so mad that they don’t have the sense to realize that I wish I could play so bad but physically can’t, so their complaining gets annoying. a lot of people just don’t understand or don’t care enough but I’m lucky to have a great support group of friends and family that understand me and my illness better! Whenever I hear these comments, I just try to remember that they don’t understand and talk to God to calm me down because I know He’s using my sickness for His glory and for good things! 🙂
Thank you for your comment, Haley! I can absolutely relate to your frustrations. Sometimes its hard for me to hear people say that they hate going to the gym. I really miss being able to do a full workout and would love to be able to go to the gym. I know other POTSies also get frustrated when their friends say something about wishing they didn’t have to work, whereas most POTSies would LOVE to be able to get up and go to an office everyday! Being a teenager is difficult enough – I can’t imagine having to deal with POTS as well. I’m very happy to hear that you have a great support group – that can make such a difference!