When I was diagnosed with lupus and RA in April 2008, at the age of 22, I believed that it was the very worst thing – aside from dying – that could happen to me. And now I feel that, that was just a naïve hope because at the time, I couldn’t imagine anything worse. But unfortunately, there was a worse.
Last August, there was a terrible flood in Michigan, and my dad died as a result of it. He was just 62 years old. When that happened, it became the worst thing that had ever happened to me. I hadn’t really considered that the worse thing to happen to me would actually happen to someone else in my life, but it did.
Being overcome with emotional pain, I was expecting to flare. I wasn’t eating or sleeping well, and my entire life had changed in the blink of an eye. Like my illnesses, this was a totally unexpected event. No one saw it coming. But the cure for this pain and grief isn’t a pill or injection that may ease your symptoms. And I’m not sure it’s time, either.
I didn’t end up flaring. And honestly, I was angry, because I wanted my emotional pain and my physical pain to match. I would have almost welcomed a flare that prevented me from getting out of bed because that way I could have said I was sick, instead of saying I was sad.
Most people don’t know what it’s like to be chronically ill unless they are themselves. And I think the same is true when a loved one dies young or in a horrible manner, or both. People don’t know what it’s like unless they’ve lived it themselves. Even people that have lost loved ones to illness sometimes cannot comprehend what it’s like when you don’t have the opportunity to say goodbye, or you don’t have the closure of knowing where, when, and how your loved one died. That’s a hole that no one will ever be able to fill.
And I wouldn’t wish the pain of illness or grief on anyone. I really wouldn’t. But some understanding would be helpful. Over the last year now, I’ve felt that people are expecting me to have gotten over my dad’s death. But that’s not possible, especially since he technically died on my birthday.
This year, I turned 30. And it didn’t really feel like my birthday. I went out with a few friends, and my boyfriend started to make a toast about what a difficult year it had been, and two friends shut him down, like he shouldn’t be talking about it. As if my boyfriend talking about it was going to knock me back into reality. But it is my reality. I live everyday with the fact that my dad is no longer here.
And that’s never going to go away. So I would like people to understand that illness and grief are painful, but more painful is having to live a “happy” life because being sad is hard on everybody else. It’s difficult that my illnesses and my dad’s death remain elephants in the room for a lot of people in my life, considering how open and honest I have been about them online. My closest friends and family get it, but none of them are physically in close proximity to me.
It makes coping hard when people think that suffering in silence is better than suffering in the comfort of supportive people. I’m not the kind of person who will unload my problems onto just anyone. And I won’t. So if you’re a healthy person and you don’t ask me how I’m feeling, I’m not going to just up and tell you that. And I’m not going to just tell you how I feel about losing my dad unless you ask.
But I will write about it. And I hope in writing about it, other people who have had similar experiences will know that even though they feel alone in this, they aren’t. So whether you are dealing with the physical or emotional pain of RA, or you’re dealing with the physical and emotional pain of losing a loved one, or both, there are others out there who are willing to listen and care, you just have to find those people and that can be the hard part.
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Beyond Illness: Coping With Loss