This is probably one of the most controversial things I’ve ever written on this blog, but I really feel moved to put it out there, so here it it. I wrote this blog post years ago, years before I even started blogging, after reading Anatomy of the Spirit: The Seven Stages of Power and Healing, by the unfathomable (in a good way!), Caroline Myss.
I realised a few years ago that my illness made me live in absolute fear. When you’re diagnosed with something, there’s always fear and uncertainty, and for most people, it passes…but not for me. I was too tired and sick to think much about it at the beginning, but as I started to heal, I realised that, as twisted and strange as this might seem, I was holding on to some parts of being ill. They were comfortable, they were familiar and they came to be all I’d ever known. I became the ‘just in case’ girl- I’m not going to apply for that job just in case I get rejected, I’m not going to go out for that meal tonight just in case I feel tired tomorrow, I’m not going to ask him for help just in case he thinks I’m an idiot. I lived in my safe, secure little comfort zone, thanks to my illness.
This is not meant to upset anyone or to accuse anyone of faking illness or showing you that it’s all in your head. If you’re ill, you’re ill. CFS is definitely not an ‘in your head’ illness- the symptoms, as we all know, can be gut-wrenching, painful, never-ending and confronting. This article is for you if you are nearly there, but not quite, and you’re looking for something to pull you up a little. I had this realisation a while ago and it was very relevant to me, so maybe it will be for you too.
Here are 5 reasons why you or someone you know might be scared of getting better. If any of these strike a chord with you, ask yourself why and if you’re still holding on to any of them. Be honest.
1) You Still Need Down-Time and Rest
Just before I became ill, I was a mini-superwoman. Straight A student, choir, orchestra, athletics team, netball team, debating team, you name it. I didn’t realise it at the time, but my body and mind were craving some time out. I didn’t listen for a long time, so my body gave me time out- for a long time.
Being ill is not just taxing on your body, but mentally and emotionally draining. Often, as the physical symptoms have eased up, we’re left with an emotional ‘hangover’, which can leave us shattered, raw and feeling vulnerable. Thinking about your illness and healing is tiring, and maybe you’re mind is still recovering, even though your body seems to be ok. Go easy on yourself and give yourself a break.
2) Attention from your Family and Friends
Don’t get me wrong, I have the most supportive and loving family you could ever hope for, but because I was so busy being busy, I often pushed away their love and concern. Being ill subconsciously meant that I was closer to them, that I was accepting their love and they openly validated their love for me. It felt good that someone else gave me the care and attention I couldn’t give myself.
3) You Don’t Like Change
There was one point during my illness lying in bed where I genuinely couldn’t imagine living a normal life. Think about it- no responsibilities, no stress, no career path, nothing. It’s a hell of a lot easier not to have to deal with all this stuff and let others take the reins. I knew facing change and being responsible was going to be stressful and difficult, so I resisted it as much as possible through continued illness. I don’t mean to say I ‘faked’ my illness, but my negative thoughts kept me going in circles. I now love, love, love change as it makes you a brighter, more courageous person. I couldn’t have gotten to this point without my illness.
4) You’re Petrified of What Others Think of you
If you’ve been ill for a while and it’s an illness that really affected your life, it’s so much easier to play it small. It’s so much easier to feel secretly ashamed and play it safe. I did everything I could to avoid questions relating to Chronic Fatigue Syndrome: “But everyone gets really tired, don’t they?”, “Isn’t it just depression?”. For the most part though, I discovered all the questions and opinions I thought people would have were completely unfounded. Everyone was just glad I was ok and that I was recovering from whatever that ‘thing’ was.
5) You’re Absolutely Petrified of being your True Self
This for me was the big one. If I got better and really wanted to make a go of things again, this would mean having to really figure out what I wanted, where I was going, and more importantly, who I was. Thinking about it was absolutely terrifying and completely exhausting. For a lot of people, they would rather stick pins in their eyes than come clean, stand up and be their true selves. I truly believe that my illness was rooted in being inauthentic and in doing what everyone else wanted me to do. So I just hid and so did my body.
You are amazing. You are brilliant and unique, and you know this. You’ve always known this. In sickness or in health, stand up and be counted. Take your healing day by day and do not lose hope that one day you will get there. It is your life- live it.
If any of this has struck a chord with you, I’d love to hear from you below. Where are you playing small? Do you think there are any advantages to being ill?
Love and honesty,
For more on acceptance and moving forwards with CFS/M.E, click here to read all about my specially written e-book.
You shouldn’t feel worried about posting this. It has resonated with me a lot. Having had this illness for almost 3 years it has become the norm, and breaking this cycle on my road to being healed is so scary. But it’s obviously one I want to take. It takes so much courage to ‘get back out there’. If I could be a fly on the wall for a while that would be perfect, but I don’t think there’s an easy way other than to just get stuck right in. But I suppose this time I can do things my way, at my pace and make decisions that are right for me. xx
Thank you so much Marina- was slightly anxious about pressing the ‘send’ button! Breaking the cycle is scary- unbelievably scary. The best thing you can do is set yourself small targets and celebrate them as you go, but at your own pace and in your own way, as you say.
Thank you lovely Marina! xx
Wow – every word of this rings true for me. I am early in recovery from anorexia with a large dose of depression and anxiety thrown into the mix. I’m making small strides at getting better and yet I remain terrified of what comes after as it seems so completely foreign and impossible. This post gives me hope and more motivation. I know that I want to get to the other side, that the process may hurt but the outcome of actually living my life? Well worth the struggle and discomfort. Thank you. I am new to your blog and I’m looking forward to reading more.
Thank you so much for sharing your thoughts with us and welcome to the blog! The thoughts of the unknown on the ‘other side’ can be terrifying sometimes and there’s always a fear that we’re going to be sick again, but we can push through this slowly. Sending you lots of love and courage for your healing journey.
I have just come across your blog and am so glad I have! All of the above resonate with me and I have really started to look at things that could be keeping me unwell. I’ve been ill with CFS for a long long time but became too ill to work about two and a half years ago. Since then my recovery path has been a real rollercoaster. I’m going through a break up with my boyfriend of three and a half years, who has struggled with CFS for over 16 years (!). We both realised that as much as we loved each other, we both needed the space and time to go on our own recovery journeys and make ourselves better in a way that worked for us as individuals. It sounds awful but this situation has made me even more determined to get well again and to have a healthy, happy life:) I want this so badly and think I am ready! I really hope I find the strength to do this. I really think having a blog like yours will help me and I’m sure many others! Thank you so much! xx
Hi Erica- thank you so, so much for your comment. I’m so glad you’re here! So sorry to hear about you and your boyfriend, but you should feel strong and proud of yourself knowing that you’re really looking after yourself and prioritising your healing. I really hope my posts help you in some way.
Lots of love, Erica- thank you my dear! xxx
Really true for me: need down time to rest, have been so extrabusy, and so extraout of me, that I’m totally exhausted mentally and emotionally… I was feeling lonely, doing so many things, and staying at home at saturdays the last two months before falling (I was so tired, I couldn’t go out without feeling abnormally tired next day), I don’t have a boyfriend and I was/am alone at home. This has been a way of having time for me and to be in contact with many people. I felt/feel change necessary, but I didin’t know how to begin, and now I’m changing, but I don’t know where to focus… I’ve had feelings it was far easier being ill than get in to a life I don’t like at all, and that I haven’t the stregth to afford, and at the same time, was angry for being ill. And I’m petrified of being myself, because I know I don’t want the life nor the persona I was, but I don’t know what i want, or who am I. And when I get to it, I feel as if it wasn’t possible to be YOU. Now I’m having positive thoughts and focusing, and I’m wanting my true ME life, but there are some days that negatives come to me… And fear again makes me go back to my hole
I hope you Erica are getting much better. I have had kind of breaking with my sister, tired of be my main support during the worst months, and needing to live appart for herself… I hurts, but it makes you stronger, as it’s up to only you, and you want to go ahead…
Thanks for this post, Katie, I have fighted for so many months with these feelings… And I have also felt guilty for them… I know I someday will have the strength to live a normal life again. Richer than the one I left
god, it feels like this was written about me. it’s uncanny how much i relate to this. but i dont want to get better, i am scared.
Sasha, be kind to yourself my darling. The idea of becoming well when you’ve been ill for so long can be completely overwhelming and we’re not always mentally ready to pick up where we left off.
Love, Katie xx
Thank you for this. I have been ill for 15 years, using an electric wheel chair for 12 years. Some of these ideas resonated with me as I have been working on them with my therapist. When you have been ill for so long it gets difficult to imagine a well life! I’m moving forward step by step being kind to myself!
Sarah, I completely understand that feeling of forgetting what it’s like to feel well! Sending you lots of love my darling- you’re not alone- xx
Thank you, Katie, for your article, and, yes, it definitely strikes a chord especially the part about being afraid to be your true self. That part started in childhood where emotions in general were not really accepted in my family. So all those years of pretending and stuffing my feelings finally took its toll on me physically, emotionally, and mentally. Fortunately, I had a spiritual connection mostly intact; otherwise, things may have turned out much, much worse.
Rather than come out and say what I was truly experiencing in my life, I got into the habit of just saying “I’m sick” so that I wouldn’t have to do something that I didn’t want to do. I never gave myself permission to express myself emotionally, and this, I believe, might be the basis of my illness. The first part of trying to get healthy was to admit to myself and others that I was sick. I felt very ashamed to admit this and was rejected by some of my dearest relatives. But I learned to move past their rejection and tried to take care of myself the best that I could finding cutting edge doctors who were into new kinds of treatments and connecting with people who were suffering from the same kind of affliction in order to hear their stories and learn more about myself. Having websites such as yours is so very helpful for people on the healing journey. And that’s where I am now, on the healing journey. Allowing myself to face my fears and express them has been so beneficial along with trying to stay authentic even if that means moving out of my comfort zone. I pray that we all find our way out of this haze and pain of cfs, and I truly believe that we will. Thank you, Katie
Sandra, thank you so much for sharing your story, beautiful. It really touched me, as it resonates so much with my own childhood and inability to express myself. In my mind, just saying ‘I’m sick’ was a lot easier than having to really express what I was feeling. I think many of us, including our parents and grandparents, were brought up to be ‘seen and not heard’, but we’re discovering that sometimes there is a bit of a knock-on effect.
Sending you so much love, Sandra- thank you again- xxx
I’m going through a long term illness with Celiac disease and it’s been a rollercoaster. A lot of what you said makes sense. I wonder often if I like the idea of expressing my emotions while in pain, because when I was well, I never thought I could. So as long as I’m sick, people will accept my emotions.
Thanks for your comment, Mike- I’m sorry to hear you’re going through Celiac disease. It makes sense in a way that you feel you can express your emotions in pain, as this is all linked in with healing.
Take care, Mike- thinking of you.
You’re really brave for posting this, when I was struck down with CFS (after a bought of gladular fever as a teenager) I wouldn’t and haven’t been so honest about my journey.
My biggest fear was change, but in hindsight I wish I had taken it a little easier on myself as I changed anywya, which meant I wasn’t hiding behind a mental issue or anxiety, I changed anyway. I think part of the pressure of this illness is the pressure to be well, to be seen to be getting well etc. But then double edge-d sword; I got scared after a relapse of anyone seeing me out having fun, as as an adult, I have been amazed at how judgemental people are regaring illness, either the duration, the cause or any issues around that.
Convoluted reply, but just yeah, it’s a strange convoluted illnes and we’ve all had a myriad of issues to learn to work through
Alice, your reply isn’t convoluted at all. I remember very well feeling terrified to be seen to be out ‘having fun’ when I was ill, and it actually wasn’t my typical idea of fun. Sitting in a cafe just long enough not to fall asleep or meeting up with a friend when my head was spinning would make me feel instantly guilty, making the whole thing worse. We do change during this illness, but what we don’t expect is the reactions from other people.
I absolutely know that you’re going through, my love. Be strong, and take good care of yourself.
Love, Katie xx
My name is Karine and I have severe anxiety and severe depression. And I wanna get better but.. I’m scared. My illness is what helped me know my boundaries in a way and I’ve always had it. Im suppose to go to the hospital for observation because im no longer going to school. What do I do
Wow you have no idea how much I can relate to this! Thank you so much for posting this. I’m in my last year of high school and I’ve been sick for 2 years, the doctors have finally found a medication that might work for me but I am so scared to take it! As much as I dislike being sick all the time, I feel like I don’t even know how to live life “normally” without feeling sick. It feels like my life sometimes revolves around me being sick, because I feel like it is such a big part of me now! You writing this makes me feel less guilty for a part of me wanting to stay sick, I’m so confused by all these emotions but I at least now know that I’m not alone xx
Hi Grace- thank you so much for your comment, it must’ve taken you a lot of courage to write it! I know how you’re feeling- I was exactly the same! Sometimes, after being ill, we forget what ‘normal’ is and it makes us anxious. Be gentle with yourself, my lovely- xx
Dear Katie thank you for having the courage to post this. I’ve had a diagnosis of CFS/ME for a year now (though suspect it’s been coming on for at least 5 years) and recently I’ve noticed that I’m not doing the things that I know help me; I just “forget” and when I sat down and tried to imagine being well again, all the issues confronted me about not being able to be myself, not knowing who I really am, feeling like a failure in life, not being able to say no to others when they need something from me, not being able to take time out without feeling guilty, etc. etc. If that’s what I imagine my life will be again, no wonder it feels better to avoid anything that might help me recover! My life is very small but at least I have control over it and I have few demands on me, and it also gives me the perfect reason to avoid doing anything that, deep down, I don’t want to do (without being blamed for it). I guess I need to learn how to do all this “out there” in the world. Thank you again.
Caroline, thank you so much for your comment, my love. You’re incredibly courageous for sharing this, and I know that lots of people who visit this page will be inspired by your words. I know exactly how you feel!
Thank you again.
Love, Katie x
It was difficult to find online anything about being afraid to get better. When I begin my road to health and start eating better, exercising, I see a new me. The real me! And she freaks me out! She is energetic, joyful, ready to take on the world and realize her dreams! But my old mindset of tiredness and pain keep me terrified of hard work and responsibility. Thanks so much for posting this, it really helps to know were not alone.
Yes! Wow, this is so amazing, Kimberly- this is not something that’s easy to admit to yourself, so a huge well done. I felt exactly the same as you, and still sometimes have times when I’m not so sure of myself, but its nice to know you’re not alone!
Thank you for posting, Kimberly- xx