Spoonieposts

Young and Chronically Ill

Guestpost for Chronic Connection. I have permission to post it on my blog and share it, because the purpose of this site is to spread awareness about (invisible) chronic illnesses. You can find the original article here. It would mean a lot to us if you’d share it too. Thank you!

Hi! Let me introduce myself! I’m Lianne, 25yo and living in the Netherlands. I’m happy to be a guestblogger here at ChronicConnection, as I have been blogging for a few weeks now but never wrote a guestblog before. I’m excited and, to be completely honest, a bit nervous. It’s scary to put yourself out there, especially if you are a writer who hasn’t written much in the last couple of years (life got in the way – no inspiration whatsoever) and especially when you talk about being chronically ill. Now, I hear everywhere about people not accepting your illness, thinking that you do it for the attention and put you down. I totally believe that happens a lot and I’m so sorry. You shouldn’t have to go through that, life is hard enough as it is when you’re young and chronically ill. But, aside from a stupid comment my brother made about that he’s very tired too, I never experienced that. My family is mostly worried about not having an actual test to support my diagnosis (ME/cfs) and about that it could be something else, preferably something that can be cured. Not something weird and vaque like ME that doesn’t really have a cure at all, we are all just winging it, right? My boyfriend is ofcourse sometimes bummed that he has to take over most of the household chores and about that I’m not able to go out and do nice things together, at least not often. But he stepped up and takes care of me and the house, and still thinks I’m amazing and he’s lucky to have me. I never had that many close friends, but the ones I do have are very supportive. They never blame me for cancelling on them (which happens often). I don’t really see them, but I know they’re there if I need them.

Now, this is a pretty ideal situation. I have the total support of everyone close to me. But there are little things that still bother me and make me feel insecure. Like when my older neighbor askes me why I don’t work or go to school. He accepts my answer, but I still fear he’ll judge. Like when I put myself out there as a fulltime blogger: can’t I get a real job if I can do this? Sure, if they don’t mind me cancelling at the last minute, let me sleep for two hours in the afternoon, if I don’t have to think too much, calculate things, have conversations, walk a lot, stand a lot, and if I can leave to go home when I suddenly don’t feel up to it anymore. So no, I can’t work or go to school. And if I do have a few good weeks in a row, I shouldn’t think I should have a job now. I should just enjoy it, because I know these days won’t last that long. Being a freelance writer is the ideal job for me. And eventhough I know my boyfriend loves me, I still feel insecure about how long he’s going to be happy living with his chronically ill girlfriend. Will he eventually decide to leave and find a girl who’s healthy and can actually do nice things, like travelling or just going out? I don’t do him or his devotion to me justice saying this, but I can’t help that it sometimes comes to mind and makes me feel insecure.

It’s not easy being young and chronically ill. Obviously I don’t like my symptoms. Always feeling like I’m walking through water is not what I pictured it was like being 25. Quitting University, where I studied psychology, wasn’t what I had in mind when I started. I have always hated school, but at the University I felt right at home. I didn’t want to leave, but I couldn’t stay either. At one point, I had to sleep for two whole days after going to one class. I couldn’t take it anymore, my body was too weak for it. So I’ve been home for a year now. I’ve been pretty ill, too exhausted to walk (going to get a glass of water from the kitchen already felt like it was too much to take), to tired to talk, listen or well, do anything at all really. I just slept mostly. Therapy taught me about managing my energy throughout the day, so I’m feeling a lot better now, but the symptoms are here to stay, and I have to figure out how to live with it in a way that I can still get everything I want out of the life I’ve been given. I’m not one to give up my life. So I started Thehappyspoonieproject. It’s based on The Happiness Project, my favorite self-help book written by Gretchen Rubin. With this project I aim to find out what makes me happy and I want to write about it, so I started my blog on www.thehappyspoonieproject.com.

I still love life. Thankfully I’m not a very outgoing person that has to miss all that. I don’t have the desire to go jump out of a plane or go to Afrika. Just give me a book, a dog and a nice chair and I’m good for an afternoon. I’m someone who loves to be at home, doesn’t mind being alone and has some pretty solitary hobbies. So that I got going for me. I can imagine it’s even harder being imprisoned in your body when you’re a very adventurous and outgoing person. So again, I’m so sorry. Trying to focus on the positive is what works best for me. Ofcourse I’m still grieving, and I get into a spontaneous rage or crying episode at times, but sometimes it’s good to look at what chronic illness has given you, as in, the “presents” by lack of a better word. I would not have been blogging if it weren’t for me being housebound and bored. And I love blogging. I love everything about it. I wouldn’t have known how strong my relationship is, my personal insecurities aside. There is so much cool stuff I’ve learned about nutrition and so many awesome people I’ve gotten to know in the spoonie community.  These are blessings to me that my chronic illness provided for me. And I’m so, so grateful for that.

 

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12 Comments

  1. PJ

    Thank you so much for posting something I can relate to. On the relationship front, I have had two separate men leave me because of my illness (congestive heart failure/left ventricular cardiomyopathy @ 35 years old). I have learned that keeping positive is the only way to get through this stuff. We can only do the best that we can do..
    And we are all beautiful, strong people! Love to you all!

    1. admin

      I´m so sorry your illness stands in the way of relationships. I feel very blessed that I haven’t lost people due to my illness (yet). Hope and positivity is our best friend! Thank you so much for commenting!

  2. Paige

    I can totally relate with you on so many levels. I was in a car accident that shattered both of my knees and I can’t do everyday things that I once was able to do. Getting a shower is a job now and when I’m done I’m exhausted. Adding depression on top of that, I just rather not get out of bed.

    1. admin

      I’m so sorry that happened to you. Hopefully it will get better somehow. It took me two years but I finally learned how to use my limited amount of energy for the best daily life possible. I hope you will too!

  3. Thank you for sharing your story. As someone with mental health difficulties, I know what it’s liked to be judged – to be told there’s nothing wrong with me (you’re smiling too much to be sad!), and that I’m just using it as an excuse. Hopefully those people will be lucky enough not to experience it themselves. Keep your chin up, build on that positivity, and live your life to the fullest!

    1. admin

      I don’t understand the reason behind telling people they don’t look like they are having problems. I would never say such a thing. Sometimes I’d like to imagine those kind of people walking a day in our shoes. Just for a day to see what it’s like. Thank you for commenting Rachel! And you keep your chin up too 🙂

  4. I relate to posts like these so much! Especially this one, my boyfriend and I both have different strains of the same chronic illness, so while it is nice that we understand what the other is going through, I am often faced with crippling thoughts of how long the two of us can realistically live, and if we would pass on our health issues to future children. Thank you for sharing your story, and keep staying positive!

    1. admin

      Hi Margaret, thank you so much for reading and commenting! I’m sorry you are both ill, that must be hard, although you can understand each other well. If you ever need to talk to another spoonie, don’t hesitate to contact me, especially since we both have concerns about future children.

  5. I like your positive spirit, keep it up!

    1. admin

      thank you! 🙂

  6. Lianne, thank you so much for sharing your story. I’m also chronically ill and have a lot of the same worries – if the inconvenience of my condition will negatively impact my relationship, how difficult my job can be (I’m a teacher) on days when I don’t feel well, and if I will ever be able to manage my condition. I love your idea of thinking about the presents that chronic illness has given me. I feel like I’m so focused on taking care of my body and making sure that it’s healthy, rather than just worrying about how it looks, which is what I mostly thought about before chronic illness. It’s a totally different mindset, and I’m really thankful for it!

    1. admin

      Hi Emmi, thank you so much for commenting! I think the worries will always stay – even if our loved ones tell us not to worry – but the most important thing is to stay on top of our self-esteem and not let our illness ruin that. It can be very hard, but as long as we know we try our very best and we didn’t ask for this, we can stay in touch with who we are and be proud of that. Because really, we are warriors! 🙂 thank you so much for reading!

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