I Have No Clue What I’m Doing with My Life

By Sarah Lee

2 min read

I know, I know-—none of us really know what we’re doing with our lives. The majority of the world is just fumbling around hoping that everything works out for the better. However living with a chronic illness, especially being in the worst condition I have ever been in the last 16 years, it has changed everything for me.

I constantly feel like I’m not moving forward

This time last year I tried to go back to college. I wasn’t doing well with my health, but I wanted to give myself a challenge and try my damn best to work towards pursuing, well, anything. I learned the hard way that it wasn’t something I could sustain long term with the current condition of my health, so after about 6 or 7 months I made the decision to drop out.

Now a year has flown by somehow, and I find myself wondering “Will I ever go back to school?”, or “Am I ever going to be able to make something of myself?” In reality, I know someday, I’ll have some sort of career. But two years of my life and gone in the blink of an eye, spending almost entirely every single day in the confines of my home. Yet I’m still in the same place I was two years ago—if anything, I feel like I’ve moved even further back.

I feel like anything I’ve wanted out of life, I can’t achieve anymore

The idea that the state of my health may be forever terrifies me because, almost all of the dreams that I have would be now impossible. As of right now, I can barely keep up with writing this article. I haven’t been able to pursue any of my dreams or goals. Everything in my life has been put on pause. So how am I supposed to move forward if where I currently am is all I can handle? It feels like I’m being forced to reevaluate what’s actually possible for me-—like I have to sacrifice everything I want for merely what I can handle.

I’ve lost whatever path I thought I was following

For years now, I had a set plan in my head. Not so permanent that I couldn’t naturally ebb and flow through the curveballs life threw at me, but I at least knew what paths laid ahead of me. Once I got this sick, I lost my way and became directionless. There is so much I want to do, so much that I want to accomplish, and so many roads I want to travel down. Now those roads have been blocked off and I have no way out. I’m trapped.

Where do I go from here?

What does success even mean for me anymore? What do I want from life if what I really want is no longer attainable? How am I going to financially provide for myself? I’m sure some day I will find out. But for now, I feel perplexed and motionless. If you too feel this way, I am so sorry. Just know that both you and I can at least find comfort in knowing we are not going through this alone.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The AxialSpondyloarthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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Julie Vallortigara Moderator & Contributor
Hi <inline-mention username="Sarah Lee" user-id="2106878"/> I am sorry you are feeling you are not moving forward or engaging on the path you wish to take. Yes living with AxSpa is bloody tough and it does make us lower down our expectations sometimes, and change our vision of life and our goals! I can certainly relate to what you are describing, as I had to review my life plan and adapt after my diagnosis. Now I am wondering if you ever thought about working with a coach? It might help you to realise that you are doing things for your life and you are moving forward, even so slightly, and that you can build up on the progress you are already making (even small) and take further steps. I have found extremely helpful to talk to a coach when I felt stuck in my life, when I was struggling about taking decisions, about planning somethings for my future. I hope you can find that in a way, to explore your future, with hopes and confidence. Take care, Julie.
Anna Samson Moderator & Contributor
This article really spoke to me. I can really relate to a lot of it. Feeling trapped and motionless, wanting more from life but settling for what I can handle, it's all really rough. You are not alone, sending you spoons.
Rebecca C Moderator & Contributor
<inline-mention username="Sarah Lee" user-id="2106878"/> - You are not alone in this feeling of being "trapped" in a body that has kept you paused in time, even making you feel like you are going in reverse. To say I can relate to this is nothing short of an understatement. I had so many plans in life, none of which have come to fruition. I don't want to utter toxic positivity and say "find something that will work in your life now" bc I haven't found this. Why would anyone suffering from spondyloarthritis know what they can do for the next 10 years when living day to day is so difficult. Each day is so damn different pain-wise, fatigue-wise, or emotionally. There are days I feel I take on the world and study toward a career, but find I overdo it and regret it. Most of the time I find I am fighting to just get well, find a treatment that works, or to find a medium ground where I feel okay to just be around family. I have put off thinking about what I was hoping and wishing for and look at each day as a gift. Though I still feel stuck. I can't even look at the week ahead, cause it never turns out the way I plan it in my head. I am learning to live differently. I am sorry you are going through this ... being stuck, having pain/fatigue, coping with disease, loss of career, loss of direction, hopelessness, and/or fear. I am here to listen and support you through the good as well as bad days. Reaching out my hand to you, friend. Rebecca (comm advc)
James Hollens Moderator & Contributor
Hi <inline-mention username="Sarah Lee" user-id="2106878"/> , This is honestly one of the most relatable things that I have ever read. Since being diagnosed I have felt like I have lost my path in life a bit. The last few years have flown by and I am still searching for what to do with myself long term. It's crazy how when we are diagnosed we are told how we can manage our condition through medication, keeping active etc. but there is little information about managing the other aspects of our lives. I guess all we can really do is stay positive and hope that one day things will fall into place. The hippy in me makes me feel like everything happens for a reason and I hope that things start looking up for you soon and you are able to get things back on track - whatever path that may be. Sending love, James (Community Member)
Ali Long Moderator & Contributor
<inline-mention username="Sarah Lee" user-id="2106878"/> Before I even read your article, I knew from the title that this article was going to resonate with me so much. And it really did. Just know, you are not alone with this feeling. Living with a chronic illness really does change our life. I completely relate to you, for me, it's been two years too. I feel like I'm going backwards too, definitely not going forward. I am in the last year of my degree and so thankful that the last two years it has moved to online learning. I would have had to drop out if it was on campus. When you start feeling good again would you think about a part-time online course maybe? I know it's easier said than done, but try not to be so hard on yourself! You are dealing and living with so much more than other people your age. What I do is I set myself tiny goals, that may eventually lead to achieving my overall goal. Even if I don't know what this goal is, it sets me in the right direction. Think about what you would want if you didn't have this illness. It may take longer to get there but you can get there, even if it's a little different from your original goal. It's ok not to know. To be honest, I don't know. It's frustrating. I always wonder what my life would look like without this illness. Know you are not alone and that it's ok to come off the path. Sending my love, Ali (Community Member)