ehlers-danlos

by Tiffany Early

Initially, one of the most disabling components of my illness was the guilt that came with it. I constantly felt guilty for what I couldn’t do. The only thing more emotionally exhausting than dealing with illness is dealing with the guilt that accompanies it. I have decided that I am just inherently prone to guilt. When I bump into inanimate objects (Dizziness is another of my lovely symptoms, so I do a lot of bumping.), I apologize to them. According to Joe, I apologize to him all night long. Apparently, every time I roll over at night or flip my pillow or move, I say, “I’m sorry.”

I really have no idea why I apologize so much, but I think it was a part of me before chronic illness. It has just magnified in the past few years. What I am figuring out, though, is my guilt is typically completely unfounded.

You see, I am an inconvenience. It’s okay; I have a few redeeming characteristics. I am generally a kind person; I like to help others; I don’t litter . . . (Can you tell I’m really searching for my good qualities?). But, redeeming qualities aside, my lifestyle is a bit inconvenient. For example, I don’t drive much. I will venture out within a couple miles of my house as long as I feel okay, and I’ve had plenty of time to hydrate.

For the most part, though, I have to wait on Joe to transport me. He works all day, and I feel a little bit like a jerk to ask him to take me places when he comes in from the office. So . . . I spend the day before I need Joe to take me somewhere feeling genuinely guilty that I can’t be a ‘normal grown up’ and drive myself. Then, when Joe gets home, I apologize 47 times and feel even worse if he as much as sighs- convinced that he is frustrated at my inability to be normal.

However, the truth is, even if he does feel a little frustrated it is okay. He’s allowed to feel irritated at my condition; it doesn’t mean he is irritated at me. I’m learning, however, that it is utterly pointless for me to feel guilty for something I cannot change. I don’t ask Joe (or anyone else for that matter) to do things for me because I refuse to do them for myself. I ask for help when I need help. Feeling guilty about that is just a good way for me to impose more insecurities on myself.

So, what do I do to keep from feeling guilty? I try. I try to help Joe with job tasks that I can do. Sometimes that means I type hundreds of pages of PowerPoints and others are more exciting like when I get to help plan student events or brainstorm scoring rubrics. Joe has no choice but to be very involved in my life. He keeps track of doctors’ appointments, prescription pick ups, treatment dates, etc. The least I can do is to be just as involved in his life. That means listening to him tell about the successes and frustrations of his day, asking if I can help with some of his basic tasks, and, basically, trying to keep him from feeling alone in his world while he’s helping me hold mine together.

I used to say that I was trying to learn to live my life without guilt. In some ways, I suppose I am. However, I don’t want to live my life unapologetically. See, when I said I was living life without guilt, I started justifying everything that happened as a result of illness. I don’t want to feel guilty because people have to help me accomplish daily tasks sometimes, but I also don’t ever want to expect them to do things for me. I also don’t want to be in a place of justifying treating others poorly as a side effect of illness. Some days I feel bad; I am in pain, and I’m generally sick and tired of being sick and tired. I still have a responsibility to treat others well. Sure, I’ll be grumpy, but I don’t want to be so focused on living without guilt, that I don’t apologize when I’m wrong.

Ultimately, this is my life. I can’t change the things that have happened to me, but I can take control of how I act. I can quit focusing on my guilt and instead focus on how to let those around me know that I appreciate all they do for me.

If you have the time, in the comment section tell me what you do to make your significant other, family, friends, etc. feel appreciated. I could definitely use some more ideas.

Peace, love, and health, friends.

 

About Tiffany

Tiffany Early is a 31-year-old former middle school teacher who enjoys blogging from her back porch. She is an advocate for Ehlers Danlos Syndrome, Dysautonomia, and the chronic illness/ disabled community everywhere. Tiffany lives in Campbellsville, Kentucky (roughly the middle of nowhere) with her super fabulous husband Joe and tiny but aggressive dog, Zoey. She enjoys adventures with her husband, Netflix marathons with Zoey, and hanging out with her family- especially her super cute nephew and niece, Hagan and Mia.

Tiffany manages her blog ( www.crazychroniclife.wordpress.com ) where she examines life and relationships with chronic illness while laughing at the absurdity of the whole debacle. She also writes about her adventures in “Snooki”- the attention-seeking wheelchair. She also runs an online support group for those living with chronic illness. Tiffany strives to find the bright side . . . or at least the humorous side to living with Ehlers Danlos Syndrome every day and wishes peace, love, and health to the entire rare disease community.

Facebook– Facebook Support Group Instagram-| @crazychronictiff

2 thoughts on “My Life with Ehlers Danlos: Illness Guilt”

  1. Karen Cooperstein says:

    Hi Tiffany!
    You’re so young…but you “get it” already. I was dealing with the manifestation of Ehlers-Danlos at your age with neck fusions and other awfulness. But diagnosis from a geneticist would take more than another decade for me. The guilt/shame is a dead-end spiral. You’re wise to avoid its trap, yet to keep the appreciation of all who help us manage through this painful journey!

  2. Wendy Schmitz says:

    I think I do much of what you do. I work form home so that helps because I contribute financially more so than my husband does. But, I recognize that is unique. I also do things like manage the house bills and our kids activities, though I can’t take them. My husband has to do most of the errands, and he takes the kids places and does the deep clean of the house. I have however figured out walmart grocery shopping online so he can just pick it up and he doesn’t have to go in and sort it out. I have added cleaning products to the toilets that keep them cleaner in between actual cleaning. I try to organize our home so things are easy to find and keep clean. I order almost everything we need form amazon and walmart to cut down on useless trips. We’ve had to make some serious changes, but like you I try to pull my weight where I can so when I ask him to reload the fridge with water bottles I don’t feel so bad. 🙂 You are doing great!

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