Riding the Rollercoaster of Emotions in Life with Chronic Illness

Happiness. Sadness. Fear. Disgust. Anger. Surprise. Life with chronic illness seems to involve pretty much all of these 6 types of basic human emotion. If you are anything like me, these emotions pass through on a weekly, monthly or even daily basis. This is what made me think of a rollercoaster, with the ups, the downs and everything in between. 

So yes, anyone that knows me knows that I’m not a quiet user of this metaphorical rollercoaster. I most definitely am someone that doesn’t hold back in my emotions. I’m a chronic over-sharer. It’s my personal way of dealing with emotion. 

Others are less open in their emotions with others, and that’s ok too. We all have our ways of dealing with our emotions. 

But why is it that we go through so many different emotions in living with a chronic illness like ME CFS? 

Whatever chronic illness you have, most likely you will have spent months if not years, obtaining a diagnosis. This period is likely to have been fraught with anger, sadness, disgust at the multiple medical appointments spent having to explain yourself. 

The stories I read online of individuals being fobbed off left, right and centre by doctors claiming that their condition is “all in their head” or is “medically unexplained” all because standard blood tests come back “normal” makes me so very sad. 

I was lucky in that it – only – took me 6 months to get diagnosed with ME CFS. For many others it will have taken many more months, if not years. In the period leading up to my diagnosis I had to go from doctor to doctor, trying – desperately – to get some level of understanding, to achieve within that short 10-minute appointment slot where I was coming from. And not to just fob me off with “all new parents are tired”. *Facepalm* 

Related: Mummying and M.E. – Getting Diagnosed with ME CFS

I had gone through the full range of blood tests like everyone does in the process of being diagnosed with ME CFS. Each and every blood test came back with a “normal” result. Far from being delighted by this, I was devastated each and every time. Yet another step further away from finding out the reason behind all this. 

Once I was finally diagnosed, the main emotion I felt was happiness. A bittersweet happiness but happiness nonetheless. I was happy that I had finally been believed. Happy that finally, my mental health record was not being used as a reason for my myriad of symptoms. Happy that I finally had a name for the reason behind my debilitating fatigue and post-exertional malaise. 

This period of happiness quickly transpired into anger and fear. Anger at the total and utter lack of support and treatment options available. And fear of the future. Fear for what the next day, month, even year would bring. I suddenly was terrified about whether I’d ever get better.

It’s clear to see just the initial months of living with ME CFS showed the full range of emotions. But what is it like fully into the day-to-day workings of chronic illness life? 

The last week has seen me travel on my emotional rollercoaster (I’ll stop with the metaphor reference soon, I promise) from the depths of low, to the highs of joy. This week the grief of the loss associated with coming to terms with ME CFS hit me like a tonne of bricks. Grief is an emotion that doesn’t appear as often as other emotions, but when it does, it’s there with a vengeance. Several hours spent crying on my husband’s shoulder showed me that I really still haven’t fully come to terms with the loss of my mobility, the loss of my career, the loss of my hobbies. And I’m not sure I ever will. The kindness of the chronic illness community showed me that I’m not alone in this and I will forever be grateful for their support in these dark times. 

However only 2 days later, I’m filled with happiness and joy. Seeing my daughter beside herself with laughter at spending time at one of our favourite haunts, the zoo, has warmed my heart from the inside out. The sound of her giggling, the sight of her jumping in her favourite muddy puddles, make me happier and warmer inside than I ever would hope for, but I know full well that tomorrow the main emotion may be totally different. 

So do I deal with the full range of emotions I go through? As always these things may not apply to you or someone else but are merely what I do and want to share in case these ideas resonate with anyone else.  

1. Have honest conversations with others  

This doesn’t have to be regular full-on counselling sessions or psychotherapy, but I find close friends, my husband and family members totally essential. Like I said, I’m a chronic over-sharer and therefore totally comfortable sharing my innermost feelings, but even if you’re not, having a support network to help process your emotions will really help. 

2. Allow yourself to feel the full range of emotions

Those that have read my article “Toxic Positivity” will know that trying to suppress any emotion that isn’t a positive one, is a recipe for disaster. Experiencing the full range of emotions is normal, and most certainly happens to each of us living with chronic illness. Attempting to hide certain emotions is not a good idea. Validate the emotion you feel and allow it space. Once it’s processed then you can allow it to pass. 

3. Read about and understand your condition 

That phrase “knowledge is power” is key here. There will be medical professionals you come across who frankly haven’t even heard of M.E. (yes I’ve met several) so it’s up to you to share as much as possible, in as short as space of time as possible! 

4. Be your own advocate 

In the early stages of my condition I got incredibly angry with the – well-meaning – friends and family who were suggesting each and every “treatment” option they had heard about, from the weird to the obscure. I would get angry and quite frankly, seriously peeved that these people were not listening. They were not taking on board what I had to say about my symptoms, my condition. I now realise they were simply trying to do what they thought would help, but at the time all my energy was having to be spend on being my own advocate. I’m now glad I do this and will stand up for what is right for me and my conditions. 

5. Find a mindful based activity or hobby 

There is a reason mindfulness has gathered such momentum in the last few years. An ancient practice, mindfulness is the human ability to be fully present in the here and now, being aware of all thoughts and feelings but without judgement. It is not the act of removing all thoughts and feelings but allowing them to be present without an overly reactive or overwhelmed approach to them. I find mindfulness activities, like dot-to-dot books or colouring in, to be incredibly therapeutic in those moments when all the emotions are getting a bit overwhelming. 

But finally, one thing that is most important to take away from this is that you’re not alone. There are many, many people out there going through exactly the same rollercoaster of emotions as you. Reach out, find others online and share your story too. I look forward to meeting you online soon. 

Soph x 

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One thought on “Riding the Rollercoaster of Emotions in Life with Chronic Illness”

  1. I think you’ve done brilliantly in writing this post. Too often I find the uber positive positives difficult to swallow because they’re not my reality. It’s not the reality for many of us. Being honest, being up front about the fact that it can be damn difficult and an emotional rollercoaster (good metaphor to use) and we can get hit in the face with it from time to time when we least expect it, ripping the world from under our feet. I’m sorry you’ve had to feel like this, and I’m sorry you even need to come to accept your disability and everything that comes with it. But I think you do a brilliant job of raising awareness and providing support, and you should be very proud.

    Acceptance has been probably the hardest bit for me, not just in accepting illness and pain as part of daily life now, but accepting everything else too, the way it affects work, relationships, lifestyle, leisure, all of it. I see it more as a continual learning curve, so don’t feel disheartened that you’re realising you’re not quite at the level of acceptance you might have thought. You can’t be expected to be there or be expected to deal with all of this without the emotional upset. You’re doing the best you can and, for what it’s worth, I think you’re awesome. Great suggestions for others going through similar, too.

    Sending lots of love your way.
    Caz xxxx

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