It wasn’t supposed to be like this

Warning: contains GIFs

It’s my 10 year high school reunion this weekend, which is a shitful time for anyone, let alone someone with a chronic illness. Just the thought of it acts as a reminder that my life is nowhere near where I thought it would be, or where I want it to be now.

Romy & Michele from Romy and Michele's High School Reunion
Everyone tells me I should Romy & Michele it, but I’ve actually never seen that movie (and don’t plan to).

I know, I know – no one ends up where they thought they would, life is what happens to you while you’re busy making other plans, etc etc. But ending up in a different career than you chose in year 12 or not yet fulfilling your life’s ambitions is no comparison to having your life absolutely fucking decimated by chronic illness. I don’t think many adults experiencing a vague sense of ennui would trade it in for being incapacitated.

And to be honest, I’m really fucking tired of being made to feel like I should be grateful for how my life is now, as if being chronically ill is just another lifestyle choice, comparable to my peers who chose to study in Melbourne, or drop out of uni and work at the bank, or marry their high school sweethearts and have kids, or become heavy metal rockers/successful comedians/emigrants/master guitar craftsmen/foster parents/teachers/you get the drift.*

I don’t want to wake up and immediately feel the weight of my illness crushing my body. I don’t want to have to learn how to walk again every 6 months after my body forgets. I don’t want to have to worry if this will be the day I become bedbound again. And I really don’t want to spend most of my waking hours in so much pain that life, on the whole, isn’t a heap of fun for me right now.

I didn't ask for that! I don't want it!

It’s ok to admit you’re not ok, I reckon. Because if you’re honest with yourself, then you can also acknowledge the things that are good in your life.

I have realised my worth, and would no longer sit in mortified silence while classmates** told racist jokes and called me a dyke for having short hair. (Ugh, Warrnambool.)

Tapestry. "Behold! I am of simple mind." "Silence thyself fool and leave this place." "Twas merely an act."

I now know just how truly, horrifically terrible life can be (in some ways at least), which might seem a bad thing – but I believe it teaches empathy, and brings you closer to those who have experienced similar trauma. And although it has been a cruel lesson in some ways, I have learnt that love is an action, and I’m lucky to be surrounded by those will support me through bad times as well as good.

Best of all, I have found riches in the online chronic illness community. I’ve met people (predominantly young women) who are the strongest, most clever and determined people I know, and my life would be far worse off without them.

Above: watch Jen Brea’s TED talk if you want to know just how badass spoonies can be.

I may not have become a psychologist, an academic or nun (this is not a joke and I seriously considered it!), but I have become a strong person who has been through a lot of shit (both literally and metaphorically), who has been to the brink of death and back, and somehow always survived. And I don’t need a reunion to remind me of that.

Lucille Bluth rolls eyes
And hopefully one day I’ll achieve my goal of becoming Lucille Bluth.



*These are all real examples, just because I never fail to be amazed at how successful my peers have become. I really am happy for them.

**OK, just one.

Author: Siobhan S

20 something, living in country Australia. Spoonie profile: ME/CFS, dysautonomia, anxiety. All about sewing, knitting and food. Unapologetic feminist and disability advocate.

23 thoughts on “It wasn’t supposed to be like this”

  1. You are amazing and inspiring as well Siobhan – even if you’re not a master guitar craftsman. Blessed to be your on-line friend and floored by what you manage to achieve in a life so dominated by illness. I had the worst time at high school so have never felt the desire to attend a reunion, but take your point entirely that where your life is at now, is not what you wanted or expected and these markers can be a very painful reminder of that. Sending love xx


  2. Mine is next summer and for a split second I pondered going but then reality kicked in and I thought…nah I’m good. The stress before and during is too many spoons on an undeserving crowd. How can I say this? I’m connected with a good bit of them of FB and not one has said word one on any CFS post I’ve made. Plus the tickets are $75 and they are having a taco bar. Now I ask you…who would spend $75 for tacos?! Not me😁

    Sending you hugs and just feel compelled to tell you that the strength and courage you show everyday is more than most will deal with in a year or a lifetime. You’re right it wasn’t supposed to be like this, but it is and look how you’ve persevered despite it all! I greatly admire your sewing and writing, and I know many others do too. 🌸

    Liked by 2 people

    1. $75??? That’s ridiculous! The stress before/after an event is definitely something to take into consideration when planning outings…wouldn’t it be nice for something to just be simple for once?

      Thank you for your kindness and friendship, I really appreciate it ❤

      Liked by 1 person

  3. *hugs* for you; I’m sorry that the reunion has been yet another reminder of the realities of living with chronic illness. Some people have very privileged attitudes about what constitutes “success” or “failure,” and so casually minimize the experiences of others.

    You are an amazingly strong person and I am in awe of what you accomplish, both with your sewing and your fierce writing(s) about fun stuff (sewing, knitting) and critically important stuff (CFS/ME research, social justice, etc.) too. You are a wonderful and worthy human being, and you sure don’t need a reunion to prove that. ❤


    1. Thank you so much ❤❤❤ I suspect the idea of what constitutes success and failure varies a lot amongst my peers, and not every has the same conception of it as me!

      I must say I loved your explanation of your username for #bpsewvember. I’m in favour of all Mads Mikkelsen, all the time!

      Liked by 1 person

  4. I completely understand your frustration. Class reunions can basically suck anyway because they bring up soooooo many issues and inevitable self comparisons. Stir ME/CFS into the mix and it’s a recipe for disaster. Being successful is relative in any situation. You are successfully dealing with the rough waters of ME/CFS which is huge and deserves acknowledgment.
    Sending big hugs!


  5. When I think of you, I think of a highly intelligent woman, talented in so many ways, gifted in writing, sewing, knitting. Well spoken, and did I say interesting! :o)
    I know you have a chronic illness, and I with my chronic illnesses (MS and kidney disease, the top two of a long list) understand that that is not who we are! :o) We are so much more!
    I graduated 42 years ago. I’ve never been to a HS reunion, mostly because we moved 2 yrs before I could graduate from the High school I wanted to graduate from. :o(
    It has taken years for me to accept all I’ve had to live through with being ill. Missing fun activities, losing days recovering. But at age 60 I can confidently tell you I love who I am. And I’m fine with who I am now! :o) Why did it take me so long? Peer Pressure mostly.
    But now I look at people who give me BS or sideways looks and I just walk away thinking their loss. They lose when they dismiss us as whole people.
    It’s your Reunions loss that they are so petty. Life is about so much more! I think you are AMAZING!!


    1. Thank you Eliz ❤❤❤ I’m glad you’ve come to such a good place for yourself, and you love who you are. You have good reason to, of course! You are generous and kindhearted, and I really admire the love you show for all your kids, young and old.
      I think I’m getting to that point, but it’s just a sad reminder that there is a lot I would like to do at times that I cannot.


  6. I no longer live in the same city I went to high school in. I’d have to take a plane to go to one – and even if spoons weren’t an issue, I can’t ever see spending limited vacation dollars going back to a high school I could barely stand the first time around! I think when mine next comes around I’ll remind myself I wouldn’t want to pay for it anyway :-p


  7. One of the advantages to coming from a disadvantaged background is my school doesn’t really do reunions. They have anniversary events for the school but not actual class reunions.


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