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Coping with what feels like “unfulfilled potential”

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I am excellent.

Also modest.

The thing is, my body isn’t so excellent.

One of the most difficult things to learn to deal with when you have a chronic illness is the curse of “what could have been”. Many people I know, people who have no health problems, have said to me “well, Natasha, that’s just life. You don’t always get to do what you want”. I would argue it’s so much more than that.

Getting ill at whatever age sucks, but when you’re in your teens and twenties you’re supposed to be out there, living the life and doing all the things you’re supposed to be doing to at least try to create something. A huge amount of opportunities are taken away from you, and things that you would take for granted just aren’t even an option.

There’s a reason why I have no patience for the people around me who have no reason stopping them from doing things. They don’t realise how much I would kill to have the one basic thing that they take for granted – the health to try (and maybe fail) to achieve the things I want.

A few of my friends, one in particular who this blog post is for, have been speaking to me recently about their feelings of unfulfilled potential. And trust me, I know how they feel. It’s the one thing that I have to constantly push to the back of my mind in order to get through each day.

I have had opportunities, personally and professionally, that have been really fantastic and in some cases once in a lifetime. However, because of my declining health I’ve had to stop each and every single one of them. Managing my emotions around this is probably as hard as the physical act of having to stop. And while it still affects me, I’m getting more and more used to figuring out how to cope with it. But, I have to say, sometimes it really does affect me. And most people don’t see me when I’m a crying hysterical mess about it. It’s ok to grieve for what you feel like you’ve lost, and don’t let anyone tell you that it’s not. It’s just incredibly important to not let it overwhelm you entirely and keep you stuck there. My mum has a rule that she’ll let me wallow for a day and then I have to deal with it.

My current way of dealing with life is that I just have to go with the flow. And honestly, this is the best advice I can give to anyone. Here’s why:

The last few months have been particularly bad health-wise. I had to stay with my parents at the house and was incredibly unwell. Then I felt a tiny bit better. And yesterday I had two hours where I felt better than I did in months. It was extremely exciting. And then my body crashed and I felt utterly rubbish again. It made me sad.

It was like a lovely little microcosm of my whole experience with chronic illness.

The lack of security in knowing when you’re going to be able to do things (aside from generally being unable to function, y’know, the basics) is the one thing that stands in my way when I’m trying to go out there and pursue the things that I enjoy. After brief (read: several prolonged) freak outs about not having a full-time income (unfortunately chronic illness blogging isn’t the most lucrative path..speaking of, I wrote some ebooks!) I realised that no matter how much I wanted to be working a full time job in a field that I’m passionate about, I’m just not well enough.

I’m trying to learn more about pacing and being sensible about how I look after myself. Pacing is the one thing that I hate. I’m very boom and bust, but I think that’s quite common for many of us. I’d rather push myself to keep going, keep trying, keep fighting as much as possible, so that when I stop it’s not my decision, but my body forcing me. But I’ve realised that stopping and resting, truly resting, is the one thing that I can do to try and make sure that I’m listening. Now when I do an activity that I know is exhausting, I won’t spend hours afterwards working in bed (that’s not resting!) and I’ll make sure to really plan what I’m doing to try not to make myself worse. For example, it’s my birthday on Wednesday and I’m going into town for food and a show with my friend. I’m making sure to rest up before and after so I can really make the most of it.

I think the biggest struggle for those of us who are still young (although I’m nearly 27, so old!), is how can we have careers? I see jobs that I think of applying for, or am offered opportunities that would require me to work several days a week and I know that I can’t commit to that. I don’t know how I’m going to feel on any given day, so committing to full time, real world work is currently really not sensible. I can force myself through one day a week, but that would be on the condition I spent most of my time recovering. Of course, I don’t know where things will stand when the weather improves. I may be significantly better. But if I push myself now, I know I won’t be. This is just where things are right now. And while I’m not really ok with it, I have to be.

When I talk about not pushing, I don’t mean just stopping and giving up. It’s really important to learn your limits and to keep trying new things, even if you have to stop. Find compromises and be proud of small accomplishments. You may have read my last blog post where I wrote about deciding to try and use the time I have (lots of it!) wisely and study for a Master’s degree from home. I wanted to feel like I haven’t wasted this time. Today I finished writing my first essay. Honestly, it was harder than I thought. My chronic fatigue and brain fog have meant that retaining information is pretty much impossible and writing in fits and starts of minutes at a time is not the easiest thing. Intellectual stimulation is just as exhausting for me as physical exertion, so I’ve been sleeping a lot more than I usually do. But, after some words of advice and encouragement from one of my old professors (who I respect incredibly) I pushed through enough to finish my essay three days before the extra time I had blocked off to do it. And I’m incredibly proud of myself because I didn’t think I would be able to do it.

I don’t care what I get in it, I just want to pass. And that’s an achievement. I’m not working in a full time job and have a career all set out, but I’m looking at the here and now. And that’s all I can do. And hey, I just finished my first essay for my first module of my Master’s degree. And I’ve already had to drop out of one Master’s programme, so this is progress!

I’m interested in too many things to have a fixed goal, and I don’t like them anyway. I need to be able to be flexible (ha, EDS joke) enough to make changes to what I’m doing while trying not to get too upset if I can’t do something that I want to because I’m not well enough. Accepting that is really important. It’s not using my health as an excuse. It’s accepting where you are right now physically, and making sure you’re doing everything you can to look after yourself.

One thing I have never struggled with is guilt. I don’t somehow blame myself for the way I feel. It’s not me, it’s not a reflection on me. It’s my body. I have a condition that I was born with. My EDS collagen dysfunction has buggered me up. That’s not my fault. I never see my inability to go and do things as my fault. I don’t feel guilty about it. I know with all my heart that I try so hard every day just to keep going. That anything I do on top of that is a big deal. Seeing small things as victories seemed super lame for a really long time. But it’s vital to start understanding that they are.

Is it frustrating? Of course it is. I’d be living in Paris being a big bossy boss and doing all kinds of fabulous things, duh. But if there’s any advice that I can depart in a tl;dr kind of way, it would be this:

  1. Never give up – find compromises and things that keep pushing you forward. For me it’s my course, teaching myself to code, doing small flexible freelance jobs (I am determined to find work that is me-friendly. It may not be for a big company, but I know I have enough to offer that I can find a way to make it work) and writing this blog
  2. Celebrate your small victories
  3. Don’t feel guilty if you can’t do what you thought you would be doing
  4. It’s ok to grieve for what you wish you had
  5. You’re still you
  6. Find a support network and people that understand you without you needing to explain
  7. Your life isn’t over, it’s just going a different way than you thought. Channel that into something else, no matter how small. Even if it’s finding the energy to make some food or have a shower
  8. You’re not the only one going through this and the more we all try and raise awareness, the more support (hopefully) we will get

Have you seen my ebooks? You can find the Sick Girls’ Guide for family and friends, as well as the Sick Girls’ Guide to diagnosis here: Please check it out and support my work :)

If you’re in your teens or 20’s and are struggling with chronic illness, check out my coaching services for someone to talk to who ‘gets it’.

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11 Comments

11 Comments on Coping with what feels like “unfulfilled potential”

  1. Silvia Logan
    December 7, 2015 at 12:26 am (2 years ago)

    Natasha, I have read your blog. It is very well written. I also found your story very touching. I understand you very well that studying and suffering from a chronic illness is very difficult for you sometimes. I sympathize with you very well. I am wishing you the best with your Master degree in Law.

    Reply
    • Natasha Lipman
      December 7, 2015 at 12:29 am (2 years ago)

      Hi Silvia, thank you so much!

      Reply
  2. Jen Farrant
    December 7, 2015 at 4:31 pm (2 years ago)

    yes, yes, yes.

    I think the key thing is you are still you, the illness doesn’t take away from that.

    I too am very sad at how much this stupid illness limits me and stops all that I could achieve

    Pacing is my arch nemsis, but my friend and ally too, I just have to accept it is what it is and go with it. For example working for two hours is not good pacing. And of course I say this from my place of pacing perfection. ha ha hah HA HA HA HAHAH. Ahem. I’ve just had to make some difficult choices because of pacing – http://www.jenfarrant.com/difficult-choices/ They made me sad, but it’s because of pacing that I have just done my grade 5 flute exam, whereas in Jan I could hardly sit up long enough holding my flute to make it through a piece.

    Reply
    • Natasha Lipman
      December 10, 2015 at 8:47 pm (2 years ago)

      That’s amazing, though. Congratulations!

      Reply
  3. Jen
    December 9, 2015 at 2:50 am (2 years ago)

    I’d love to learn not to feel guilty. I’d also love to learn how to accept what EDS has made of me, unfortunately, all I ever had was my mind, and although the fog slows me down, it’s not enough to turn off the inane neuroses that is slowly eating away at my sanity.
    I want to write the words I was meant to write; to paint the things I was meant to paint…but I can find nothing to write about; and nothing that I want the world to see forms any image that I could translate. I’m not grieving; I’m the one who died and EDS is all that is left behind.

    Reply
    • Natasha Lipman
      December 10, 2015 at 8:46 pm (2 years ago)

      I’m so sorry to hear that, Jen. I really hope you find something to bring you comfort.

      Reply
  4. Rosie
    December 10, 2015 at 3:28 pm (2 years ago)

    Hi Natasha
    Thanks for writing this article. I’ve been having a particularly bad week with pain and fatigue so I can totally relate.
    One of the things I find hardest is having to explain whats wrong to other people and also feeling abnormal for not being able to do things. I am currently looking into finding the right support and pain management and totally agree that there should be more awareness on EDS. I am learning upholstery but am starting to realise that it is very physical and tiring (let alone the course work) and the realisation that I may not be able to be a full time upholsterer at the end of the course is quite depressing. Things are definitely going in a different direction than expected so I guess it is all about compromise and learning your limits. Like you say, i’m not the only one going through this and I’m a great believer in positive mental attitude. EDS sufferers unite!!

    Reply
  5. Roisin
    December 10, 2015 at 7:44 pm (2 years ago)

    Natasha, I think you are my long lost soul sister! Everything you wrote had me getting all excited because you took the words right out of my mouth! I just had my birthday, turned 28, and I’ve had one shit of a year getting sicker and sicker, having to stop working on my phd (which I was doing part time anyway), move home with my parents. And I feel kinda warm and fuzzy inside knowing that you are experiencing the issues. Okay, that sounded weird but you know what I mean – that feeling you get when someone knows exactly what you are going through. Thanks for the awesome blog post. Looking forward to reading more :)

    Reply
    • Natasha Lipman
      December 10, 2015 at 8:45 pm (2 years ago)

      Ha! Thanks Roisin! I just had a look at your blog, and I adored your snark about The Secret. If one more person tells me to read it…*shakes fist*

      Thanks so much for your kind words about my blog, I’m so glad it resonated with you. Your research sounds super interesting too! I hope you’re having a lovely evening.

      Reply
    • Silvia Logan
      December 10, 2015 at 9:26 pm (2 years ago)

      I feel sorry for you too Roisin that you are not feeling well. I can understand how difficult it is for you to work and concentrate on your work properly, when you have an illness. It can be very stressful. I wish you well.

      Reply
  6. Shannon
    December 10, 2015 at 10:10 pm (2 years ago)

    Beautiful article. Thank you.

    I appreciate your comments about Boom or Bust. I finally see my fallen projects for what they were: too much for me.

    That’s huge because unlike you I have only recently been diagnosed at 38 with 3 kids and several lost opportunities including a business I ran for 4 years and had to walk away from. I persistently guilted myself that I was unfocused or unreliable instead of the fact that my body simply couldn’t continue to meet the demands of jobs and lifestyles I created.

    The truth is I can’t (as many chronic health suffers must admit) do with my talents and opportunities what a well person could.

    As I again try to move in a new direction I hope it is blessed with as much self-awareness as you seem to show.

    Pace your life my friend. There are many enjoyable things to come, and you are entitled to enjoy them. You have a great advantage knowing how to accept that.

    Reply

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