What to Tell Others
I have a hard time talking about my pain and illness with others. It’s something I’m trying to get better at, especially with close friends.
Fundamentally, I struggle with the question: how much do I share? How much can others handle? How much do I give away? Will I be burdening people with the truth?
My husband is my confidante. From the moment we met, he was observant. He sometimes knows I am in pain or feeling poorly before I do. When Richard asks how I am feeling, I answer honestly.
Perhaps because we share our life, I do not feel I am burdening him. I also know he cares and will ask if there’s anything he can do to help me feel better, like get more medication. As much as I take care of him, he is taking care of me.
But what do I tell others? And how much do they really want to know?
For me, I have a small number of close friends with whom I will share health updates and how my RA is treating me. Partly, I think this is just part of my personality that I can share and be more open with a smaller group. Another piece is that I don’t want to overburden other people with worry about my condition when they cannot do anything to change it.
Spending time with friends and family can make me feel better. I usually prefer hearing about others and don’t want to talk too much about myself, especially if I am not feeling well. Enjoying the camaraderie and some laughs can lighten my mood and pain on a bad day.
However, some support and sympathy can also be really helpful. During a recent period when I wasn’t feeling well I had dinner with two close friends. Often, when I’m asked: how are you? I will say fine. But this time I found myself admitting that I felt awful and frustrated. My terrific friends were great listeners and sharing my troubles made me feel better.
In a different arena, I rarely ever share. As much as I like my coworkers, I don’t share how I am feeling unless I think it may be affecting my work. For me, work is an escape. I enjoy work because I spend the day focusing on producing and can get distracted from whatever joint pain is plaguing me that day. I honestly don’t want to talk much about my RA in the office.
There are days when I am flaring or exhausted and it’s like my RA is written across my face. On these days, I may mention that I’m not feeling my best. Still, I prefer to focus on the work and not bring my personal story to the office. I think part of it is also that I want other people not to start dwelling on my RA or feel sorry for me. I want to just be a co-worker, as much as possible.
It’s a tricky maze to figure out what we’re comfortable sharing about our illness, its progression, and the ongoing care of all RA’s pain and symptoms. For me, it does vary by the day and the situation. I’m constantly making calculations about how much I want to share with each individual.
I can’t say there are easy answers. Part of the challenge is thinking about how much I want other people to know about the effects of my RA. But the calculation also encompasses—how much do others want to know and hear? It’s a delicate balance of protecting myself and protecting others.
On average, how many times per month do you (or your caretaker) go to the pharmacy?
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