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May 062015
 

 

For a while now, I really didn’t want to go anywhere near this post, even though I knew you might benefit from it. It’s such an incredible (and unintentional) coincidence that at the exact time I publish this on Wednesday evening, I’ll be sitting in a room with some like-minded people waiting to start my Lifeline volunteer counsellor training.

I didn’t want to think about this blog post- I didn’t want to write it and just plain didn’t want to go there. This is the most resistant I think I’ve ever felt to writing a post. I’ve already checked my inbox 3 times, and I’m already turning this into one of the longest introductions ever just so I don’t have to talk about it.

But something wants me to spill my guts about depression and CFS. (I actually realised while writing this that it’s a part of my recovery that I didn’t want to think about or acknowledge, but it was there- of course it was).

Depression and CFS

Depression and Shame

Depression and shame are irrepressibly linked. However much we would like to think that there’s no stigma attached to depression, it makes most people squirm a little in their seats. Not many people know how to deal with it, whether going through it themselves or helping someone else, and if we started off a conversation with someone, what in the world are we supposed to say? Are we going to make the situation worse?

The media (and social media, for that matter) are full of images of over-the-moon, glowing, happy happy people running around in the sun with perfect clothes and not a care in the world (the wellness industry is unfortunately very guilty of this- how many pictures of people meditating on rocks near the ocean have you seen recently?!) Logically, we know that most people don’t have lives like this, but that doesn’t stop us wanting what they have and comparing ourselves to oblivion.

In some cultures, generations and areas, especially in the area where I’m originally from in the North-East of England, anything being less than fine seems to be brushed under the carpet and frowned upon. Many people seem to spend a lot of time and energy convincing people, without a shadow of a doubt, that they are fine and that whatever it is they’re going through, they are being strong and getting through it. Weakness is not an option. It’s only since moving to Australia that I’ve realised how incredibly angry and stifled this might make people feel, when all they really want to do is sound it out, to tell someone what they’re going through without judgement or intermittent advice.

My Experience of Depression

I would be lying if I said that accepting CFS was easy. I would be lying if I told you that acceptance washed over me like a warm ocean wave, I had an awe-inspiring spiritual awakening and suddenly I just got it. It took me years to finally realise that this was how it was going to be for a while.

I’d also be lying if I told you that this article was a breeze for me to write. Even now, I have a huge lump in my throat and I’m feeling a little jittery.

The raw, honest truth of it is that I was depressed. Of course I was- how could I not have been? I had my whole life and ambitions taken away from me, and was forced to accept some ugly, painful reality that you wouldn’t wish on your worst enemy. The whole course of my life as I had known it for 18 years was whipped out from under me. Having friends and family question you, coupled with the fact that there’s a huge social stigma attached to CFS anyway, meant that I felt completely alone and seethingly angry.

As I mention in this post, the doctor prescribed me antidepressants (Prozac). I took the prescription, but didn’t end up getting the tablets. I just couldn’t admit to myself that I might need help with this, and to be honest, I didn’t feel as dark and fed-up as I thought I should be to warrant being on medication. In the end, on my next visit to the doctor, he wrote me out another prescription (I ‘accidently’ lost the first one), and to make my parents feel a little better, I got the tablets from the pharmacy.

I didn’t stay on the antidepressants for very long though. I think I lasted about 3 months before coming off them. I felt nauseous taking them and intuitively knew that this was not the right thing for my body. Some people might comment that I should have stuck with them for longer, but I just couldn’t bring myself to take them anymore. It wasn’t me.

You see, I always knew that mine wasn’t a dark, dark depression. It just felt kind of….sticky. A viscous substance that I couldn’t quite get off my hands. We shouldn’t really compare someone else’s experience of depression with our own, but some part of me needed to cling on to that element of separation. I never had thoughts about ending my life harming myself in any way and I didn’t seek counselling for the very same reasons.

soap bubble

To be honest, for about 3 dark years, I think I was in absolute shock. I barely spoke to anyone. I was shocked at how different my life was before my diagnosis to how it was now and I just couldn’t get my head around the difference in energy levels and my general appetite for life. This is the main reason why I believe I was more depressed than I admitted to be at the time- I had no desire to do anything or see anything. I was completely apathetic. Even when I was making progress, having a shower was just too much effort, not because I didn’t have the energy, but because I couldn’t see the point of it. I wasn’t able to go out of the house and my family had seen me in worse states, so why bother? When someone asked me how I was, I didn’t see the point in the telling them- I was just admitting to myself what I already knew, and which they intuitively knew as well- that nothing had changed (in fact I felt worse) and I was still feeling beyond shitty. More shitty than I ever thought it was possible for someone to feel.

Eventually, I didn’t want to fight anymore, so for the sake of my family (they didn’t deserve my anger), I started forcing myself to respond even though I didn’t want to. I started accepting their help when everything inside of me told me not to bother. I let them bundle me into the car and take me to the supermarket, even though my face was tripping me up, I looked a sight and I could barely say a word because of brain fog. It was only when I regularly forced myself into these incredibly uncomfortable situations that I realised my perspective was changing. Sometimes even being in a supermarket surrounded by strangers rummaging around in the frozen food section can bring you a surreal sense of community and belonging. Weren’t we all just rummaging around in the frozen food section?

Reaching out to others helped me reach out to myself.

I think the cloud lifted when I gradually begin to piece my life together again by restarting University and trying to maintain my energy levels. Relapses, however, were difficult to take. I didn’t learn any of the lessons they had to teach me until much later in my recovery journey and I often wondered if I would fall into the same mental state that I was in before.

Now, I’m very pleased to say that I have a better outlook that I had even before I was sick. This doesn’t mean that it’s always smooth-sailing and I’m not walking around in a bubble thinking I’m oblivious to the difficulties of life. I just believe that having lived through CFS, I now have a better emotional toolkit to be able to deal with these little niggles. My hope is that you can become equipped with your own emotional toolkit as well.

ocean

Symptoms of Depression

According to the incredible Beyond Blue, an Australian mental health charity, symptoms of depression include:

Behaviour

  • not going out anymore
  • not getting things done at work/school
  • withdrawing from close family and friends
  • relying on alcohol and sedatives
  • not doing usual enjoyable activities
  • unable to concentrate

Feelings

  • overwhelmed
  • guilty
  • irritable
  • frustrated
  • lacking in confidence
  • unhappy
  • indecisive
  • disappointed
  • miserable
  • sad

Thoughts

  • ‘I’m a failure.’
  • ‘It’s my fault.’
  • ‘Nothing good ever happens to me.’
  • ‘I’m worthless.’
  • ‘Life’s not worth living.’
  • ‘People would be better off without me.’

Physical

  • tired all the time
  • sick and run down
  • headaches and muscle pains
  • churning gut
  • sleep problems
  • loss or change of appetite
  • significant weight loss or gain

It is important to note however that just because a person has some of these symptoms, it doesn’t necessarily mean they are depressed. By the same token, not everyone who is depressed will exhibit all of these symptoms.

closed doors

Depression and CFS

Depression is not usually the cause of CFS, but it can be a result of it. All that time spent in pain and suffering might trigger something in you that you weren’t expecting. It can even scare the hell out of you.

As you’ve read here, I’m not a doctor or medically trained in any way, but my advice to you is this:

If you are having thoughts of harming yourself, not coping or of ending your life, you must, MUST seek medical or professional help. You must share what you are going through so others can help you. If you stay silent, no-one will know how you are feeling unless you tell them. You are not alone and just reaching out to one person could be the start of a great healing for you.

I know the shame you feel and I know how hopeless you feel when you’re having an off-day. You’ve read so many incredible books and you’ve watched a stack of YouTube videos, but you wake up one morning feeling wretched and like nothing it changing. But you don’t know just how strong you are my darling. Trust me- I had absolutely no idea.

As Steve Jobs famously once said, which I feels sums up my entire experience of depression:

“You can’t connect the dots looking forward; you can only connect them looking backwards. So you have to trust that the dots will somehow connect in your future.”

If you’re feeling brave, I would love to hear from you my darling- have you experienced any dark times during your illness? Have you reached out and asked for help? Let me know below.

Lots of love, Katie     xxx

  • Click here for more useful links on coping with depression during CFS courtesy of Emerge Australia.
  • An incredible poet, Sabrina Benaim, explains depression so eloquently and powerfully in this clip entitled, “Explaining My Depression to My Mother”.

(All photos by Markus Spiske).

  14 Responses to “My Honest Experience of Depression and CFS”

  1. Hi Katie – I’ve been a volunteer with Lifeline for years now. It’s a wonderful thing to do! Thanks for sharing your story too – we all have much to share with others, with our own personal journeys. xx

    • Awww, amazing! I’m sure I’m going to get a lot out of it- I’d love to hear more about your Lifeline experience my love.

      No worries- I thinking sharing my story was important for me too. Thanks for being here Katie- xx

  2. I’m so glad you wrote this. I think any chronic illness (as well as other life changes, such as deaths) almost automatically bring on depression. As you said, why wouldn’t you be depressed? We all know how hard the emotional end of illness can be and I’m so happy you are addressing this. Much love to you.

    • Thank you for writing this article and sharing your own experiences and ‘dark times’ with CFS! I am a kindergarten teacher at an inner city school district in upstate, NY! Teaching in NY right now is ridiculously stressful for even the healthiest of teachers. I am currently STRUGGLING with CFS, and trying to meet the inordinate demands of the job just exacerbates my experience with CFS and leads to further depression and helplessness.

      I have had CFS since I was 23, 17 years. It has been a major challenge my entire adult life, but has felt out of control the last year and a half following a breakup and several extremely life changing stressful events that occurred at the same time!

      I have not been able to yet regain stability with my health. My support system isn’t strong snd even my biggest supporters, who try to understand, do not completely grasp what I’m going through.

      I am in survival mode now and try to just get through each work day, which is challenging to put it mildly. When I’m not working, I’m resting, so that I can work. Thus, my social life has collapsed, which has lead to social isolation and a feeling of being alone and hopeless…and depressed!

      I reach out to family members all the time for support and I try to gain support of friends, but most of the time it feels like they are not grasping the severity. I am constantly reaching out to healthcare professionals. I have found my naturopath doctor and my spiritual healer to be the most helpful and uplifting, because although they don’t have all the answers, they have seem to understand that I am struggling; that validation is huge!

      I desperately want my life back and will continue to seek answers both from within and from the outside world. I am hopeful that one day, sooner than later, there will be more bright days, and less dark days.

      Thank you again for sharing your own deeply personal and emotionally provocative account of CFS! Your words are the inspiration that many of us need to be feel validated and not alone. Thank you for giving me the opportunity to share my experience with CFS and depression. Much gratitude! Best wishes to everyone in recovering!

      • Sending you so much love Raquel- I remember being in your position and ‘resting’ (although in hindsight, I wasn’t really) while juggling lesson plans and trying to prepare for the next day. You’ve probably seen this already, but this might help.

        Thank you so much for sharing your experience my love- we’re all here for you.

        Love, Katie xxx

    • Thanks my love- I think sharing my story was important for me too- xx

  3. Wow! Thank you – this was incredibly comforting and healing to read. I was a little startled to see the list of depression symptoms lines up so closely with my CFS symptoms, but the symptoms are the cause, not effect of my emotional state. Makes me think we need a lot more research into the neurological side of the disease!

  4. Thank you for bravery and honesty in sharing your experiences of CFS, depression and you true wonderful self. You have helped and help make my own journey with CFS and now depression less lonely and given me hope. Thank you wonderful you. With kindness and love, Cara xo

  5. I love your blog soo much Katie! You’re the only blog I think I’ve ever really subscribed to as well. I think I’ve commented earlier on another post saying how I believe I’m coming into recovery now myself (go Reishi mushroom!!) but it’s soo nice to read your wisdom and it’s just so helpful and beautiful. Thanks for putting yourself out there to do all this it means a lot, probably for a lot of people, including me
    X

    • Yey Reishi Mushroom! Thank you Anna- such a pleasure to keep writing and connecting with lovely people such a yourself- xx

  6. So this is an extremely old post but something that really helped to read, I’m in my 5th year of CFS and after feeling more positive about life i stared to work again, just one shift a week and then building it up.
    I entered a relationship in the early stages of work.
    Being in a relationship, managing working in a pub (awful routine) and fear of the future all became too much. After 2 and half years of hating the job but feeling stuck because i was so scared to go back to my old career in case i relapsed i am only now realizing (after a job change which is going great and the relationship breaking down – not so great) how depressed i had been, i think the hardest thing is noticing what is depression and what is chronic fatigue? I find this the most confusing. Thanks for writing about your experience x

    • Thank you so much for comment, K- I’m sorry you had to go through this. I agree, the lines can be a bit blurred- be kind to yourself, lovely one.

      Katie x

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