Many years ago, while attending a seminar, the keynote speaker made an effortless statement filled with such truth, it remains in the forefront of my mind. Stepping up to the podium, he simply said, “When all other means of communication fail, try words.”
I’m a believer that communication is the key to every relationship whether it’s marriage, family, friendship, doctor-patient, employee-employer, vendor-customer, etc. Without properly communicating to one and other, intentions become unclear, resulting in assumptions. And we’re all aware of the consequences when we “assume” …
Since my diagnosis of severe rheumatoid arthritis, or RA, more than 25 years ago, I’ve experienced both sides of relevant conversations involving detailed explanations, understanding, compassion and the dreaded unknown – which leads to more questions and a never-ending cycle of being a communicator as well as a listener. The one thing I’ve found to be true beyond dispute is, ‘patients need patience!’
Have you ever spoken only to get a response that’s completely unrelated or so far off of the subject that you gasp and wonder, “what exactly did the listener hear?”
Communicating my illness has been a subject of repeated challenges over the years, filled with frustration, often resulting in withdrawal. For some, the effort of try-try again is worth it – especially when they finally get it! For others, I’ve had to accept their level of comprehension and move on, avoiding the topic – and sometimes the person – altogether.
Words are the most common and obvious means of communicating, but not necessarily the most effective. There’s a right and a wrong way to express oneself in a verbal or written manner. Too many words can be overwhelming to the listener, clouding the point. A simple rule to follow is, ‘less is more.’ Be direct. Do not expect people ‘to read between the lines’ or figure out for themselves what you’re trying to say. And, while raising awareness is important, avoid inserting a lesson into every conversation. Taking the teacher/pupil stand on a regular basis can lead to more harm than good.
In my blog, “Spouse Involvement,” I wrote about an interview with my husband and his role in my care, stating, “He gets it!” What I should have said was, “He got it – finally!” Although he tried to understand, it took years of marathon conversations and acceptance from both of us.
Pamela Nave wrote in the comment section of the blog above how her husband uses her eyes as a barometer for her needs. He got it – too!
Do you find it difficult to communicate with others regarding the diagnosis of arthritis or other chronic illnesses? How do you effectively express yourself to get your point across? Have you avoided relationships due to lack of communication/understanding? If you have a “got it” story, please share in the comment section below.
I learned this late last winter, when I was flaring. I did my usual hibernation, staying in bed, not answering the phone and living on pizza delivery. I thought all of my friends just understood, but I was wrong. A friend of 20+ years, who has seen me through a great deal, became very hurt, angry, what have you...at my withdrawal. Because I did not communicate with him, he stopped contacting me as well, creating the cycle of resentment...me angry that I hadn't been invited (even though I was in bed and wouldn't have gone) and him not inviting me because he was tired of not getting a response. There was a break down in our relationship and there was hurt on both side. We are still working on rebuilding and I am still working on being more open and trying to find the balance between the "strong, silent sufferer" and my fear of being a "whiner."
Do I have people who "get it?" Yes, a few outside of my arthritis family. My sister "gets it." She has seen me through it all. She can tell I am hurting by my face, my walk, little ways others do not notice. However, there are still things she doesn't get, like why I push myself when I should rest, why I won't ask her to do something for me like open a soda bottle or pick up something that fell. Her famous words are, "Ask for help. I'm sitting right here." But if I CAN do it, even if I have to get my reacher and it takes five minutes to pick up the darned quarter, I have to try first, because there are days that I can't even try.
The others who get it are a friend whose father was dxd with RA in his 30s. She has watched him deal with the disease and how it affected him, the pain and immobility. The other is my friend who was dxd with RA this past spring. She's 32. She flared for three months before receiving her dx. She could barely walk, wash her hair, hold her pen. I went with her to her first rheumatologist appointment. She gets it now. Not just the pain, but the insecurity that comes with limping to the bathroom in a crowded bar or having to ask for help to open a can of soda.
It's easy to resent those around us for "not getting it" but RA is such a tricky disease and like anything else, if we don't communicate what we need, we cannot expect others to read our minds.
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