The Only Thing I Need From Loved Ones in My Journey With Chronic Illness
Being chronically ill is demanding. And I’m sure being close to someone with a chronic illness is really demanding and difficult as well. It’s got to seem like a minefield at times! That’s definitely how it seems to me. It’s got to be challenging to know how to help someone in such an unwinnable situation. I’ve written before about some small ways to help people with chronic illnesses, but I feel like it’s got to be difficult to read articles with so many things to do or say and others with things not to do or say…
My mom had mentioned after reading one of my articles on doubting someone with a chronic illness that she was worried she had said something wrong and offended me. The article was written about an encounter with another loved one, but even with that individual I wasn’t angry or offended! I had written the article because I feel that I articulate my thoughts more clearly through writing than I do through speaking, and I wanted to openly communicate why I had become upset rather than just get mad and expect them to figure it out.
I often write not only to help people like me who are chronically ill, but also as a way to hopefully help their loved ones better understand what they may be feeling that is difficult to communicate. I have no intention of writing to call people out to say “you’re wrong.” There’s a steep learning curve with chronic illnesses and it’s not all intuitive.
I write to help people understand what I see as common forms of miscommunication or things that are difficult to articulate in the hopes of helping better connect people. I don’t expect people to somehow just know how I’m feeling or what may upset me – it’s not always obvious – so I write to try to make future encounters easier. My intention is to help give suggestions for smoother communication in the future and to bring some awareness to things they may not have ever thought about, not to criticize.
Nobody is perfect. And like I said, it’s got to be overwhelming to try to figure out the best ways to help care for a loved one who is chronically ill. I write articles on specific issues to try to help, but I know it has to be overwhelming at times.
But I’ve come to realize what I appreciate more than anything, what I need more than anything, is effort. If you can’t think of the right thing to say or a way to help your loved one feel better, that’s OK. Just don’t stop trying. Don’t give up on trying to be there for them.
Effort does not require perfection. Effort, if anything, is the never-ending endeavor towards perfection. It’s the fuel for growth.
I don’t need or expect people to be perfect in how they deal with my illnesses. What I need is someone who is always trying their best. And I know a person’s best varies from day to day. I totally get that!
I just need someone who is willing to listen and learn and grow with me. If you don’t always know the right thing to say, if you don’t know how to comfort me or how to express what you’re feeling or your thoughts, that’s OK. If you don’t understand, that’s OK, too. What matters is that you keep trying and stick with me. We’ll figure it out together.
And this is needed from both parties in a relationship of any kind. It goes both ways. Sometimes I become self-absorbed when I’m in pain a lot or I get really cranky and that’s not an excuse to treat people poorly, and I need help to refocus. Sometimes I don’t know what I’m feeling or I don’t have the right words to express it, or I get too scared that you’ll leave me if I tell you what I’m feeling, so I need your patience as well.
I write about various issues people with chronic illnesses face and ways to improve relationships, but if I were to choose the most important factor in supporting someone with a chronic illness, it would be effort. I would never expect someone to be perfect in their words or actions, especially when it comes to dealing with something as complex and chaotic as chronic illness. All I ask is that they give consistent effort, and I will do my best to afford them the same.
We want to hear your story. Become a Mighty contributor here.