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When I Feel Like Everyone Moved On While I'm Stuck in My Life With Chronic Illness

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Have you ever felt like everyone has moved on after something huge has happened, but you haven’t yet? That feeling like you’re getting sucked down by this enormous event — as if you were stuck in quicksand — and everyone just keeps walking and they don’t look back? They just assume you’re keeping up the pace with them? Well, that’s how I’ve been feeling.

I realize my being ill will obviously affect me in a very different way than it will affect anyone else. I say obviously, but when someone is in a situation where they are dealing with something of this magnitude, what seems obvious to them may not, in fact, be obvious to those around them. At the end of the day, all I want to do is move forward in this journey, just the same as everyone else. Instead, it seems as if I’m stuck in this huge pit of mud and I have no clue how I’m going to get out any time soon.

I’ve had a difficult time finding a balance between trying to live a “normal” life and actually talking about what I’m feeling and what I’m going through. Should I actually talk about what’s happening in my life, or would it be better if I just smile and nod along as if nothing has changed? How much do people really want to know about what’s going on in my life when they ask me how I’m doing? I don’t want to lie and say I’m great (an answer I haven’t given in roughly 11 months), but I also don’t want to be viewed as a “Negative Nancy” and always be the one bringing the mood down when I give a more realistic answer to such a simple (for most) question. My go-to answers of late have been either a simple “Fine” or “Oh you know, just taking it one day at a time.”

I guess I’m finding it challenging because everyone seems to have gone on with their lives. Meanwhile, I face this every single day. I can’t escape the reality that things have changed. Even if I am having a good day pain and energy-wise, I am faced with the reality that my life will never be the same. At the end of every day, I still need to head upstairs approximately 45 minutes earlier than whatever time I figure I will actually want to be in bed. That’s about how long it takes me to hook myself up to my IV bag, give myself my injection, take my medication and then after all that, go through my normal bedtime routine. My good, normal day has all of a sudden come to a halt and I have been brought back down to reality.

Just when I sometimes feel like I’m maybe finally getting used to this new normal, something happens to make me realize all over again that my life has been forever changed. Something as simple as taking my daughter to a jungle gym for one hour sent me to bed at 6 p.m. that day, and it took me 48 hours to recover — making me realize yet again that my life will never be the same.

Allow me to clarify that I don’t expect people’s lives to revolve around my situation. I would never want it to be that way — people all have their own lives to live. I just want to get unstuck from the muck, catch up and move on with everyone else.

Even though I may seem better, it’s an illusion that I have been able to put on. I make sure that I look good when I leave he house as I don’t want to look sick. I also don’t let people see me on my really bad days. I still struggle on a daily basis with my health, my energy and most of all, coming to terms with my new normal. I will never be able to keep up with everyone anymore, but I don’t want to miss out on more things than I already am. I have felt very left out and forgotten about since becoming sick and I’m so afraid that these feelings won’t go away.

If you think of me, text or call me. If you want to have coffee, make plans with me. Just because I’m ill, doesn’t make me a pariah. And I promise, if I’m not feeling well, I’ll let you know. I am literally unable to do more than what my illness will allow. I just ask that you understand, and please, please don’t give up on me — it’s taking everything in me to not give up on myself.

Follow this journey on A Gut Feeling.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Originally published: April 18, 2016
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