The language I find to better describe my life with chronic illness. Here’s why I heal, how this has helped my mindset and those around me.

Recovery is meant to be the stage I’m in. My doctors, everyone around me and even myself for a while called it “recovery”. But I don’t anymore.

According to the dictionary, recovery is actually defined as “a return to a normal state of health, mind, or strength”. But this idea of being completely better or “cured” contradicts my own diagnosis, and the outcome I’ve had to accept.

You see how this really plays with my mind! Is that not confusing? Needing to accept the harsh reality of my diagnosis and that this is a lifelong disorder – but then being told this is the action plan to get you better, for your recovery…

Chronic illness is just that – it’s chronic, everlasting.

I’ve always had such a thing with words and language. I’ve always given so much thought to what I say and write to anyone or even myself. Even throughout my sickness I’ve used writing and words as a form of therapy. Words mean so much, seeing all the thoughts pumping through my head on paper is therapeutic. That’s why I’ve found it so hard to call this “my recovery”. I feel like I’m cheating myself in some way to phrase it as such.

Here’s the language I find to better describe what I’m going through and some insight into how this has helped my mindset and the way I speak to those around me.

Why I heal

I was and still am constantly reminded that I will eventually get to a stage where I can manage my symptoms and extreme flare-up’s within a new lifestyle. “New”, a word I’ve had to reacquaint myself with when it’s used in relation to what I know about life and myself. So why would it be termed “recovery” if I will never be like I was before? Why tease me? Why tease us? 

I know recovery is a universal term for getting better, but it doesn’t properly encapsulate what I am now devoting my life to.

I’ve had to change my thought process about getting better, about recovery or moving forward – however you choose to phrase it! That’s why I’ve had to mentally shift myself to a state of healing. Healing is fluid. Healing includes both physical AND mental changes. For the better.  For me, healing is about living with this disorder and strengthening my mind in the way I approach remedial activities and pull myself through this. It’s about the positive changes, the setbacks and the damn ‘never gonna back down’ fight in me. It’s about my life, living with chronic illness.

I understand there is an element of recovery in chronic illness because you eventually aren’t as sick as you were at the beginning. But you also aren’t as well as you were before you got sick in the first place. So I’ve put a great deal of energy into my healing. Into my self-talk and the way I talk to those around me. I always try to use language aligned with this when speaking to others. 

I choose to heal over recover. I choose to be strong and positive. I choose to be honest and realistic. I choose to acknowledge what I am feeling and going through at each stage and be open to communicating this to those in my circle.

What this has given me

These small mental changes, such as use of language, have allowed me to become a lot stronger and persevere. I am no longer working towards or waiting to be miraculously better; rather, I’m realistic. I have shifted to an understanding that I am progressing. Though the steps may seem small it is ok. This is what my healing looks like. The fact that I am progressing is what matters. I’m getting somewhere even though I don’t yet know what the end result will look like. I am taking control. Ultimately this brings an entire new dimension to accepting my life with vestibular disorder.

A mindset focused and devoted to healing isn’t easy though. It needs to be a priority. You are consumed by illness, so you need to mirror that with being consumed by healing too. My days are filled with discomfort, wooziness, floating, brain fog, nausea and more at various stages. So I actively choose to punctuate each day with healing, to see goodness along with the bad I am going through. In practice I dedicate 3 things a day to this: gratitude, breath work and self-care. A positive and calming environment are also always priorities. I may add or leave something off some days, but I will always try to maintain my positive healing state to keep myself strong.

How others can help

Healing isn’t just about me, it’s about those around me too. I’ve explained my ‘dance with healing’ to others in a way that makes sense to me. I’ve helped them shift their understanding of my life with this disorder, my progress and the language they use too. Some people in my world may even be learning a thing or two about my mentality as they read these pieces. 

Some tips for people in supporting roles of those with chronic illness:

• If you notice your loved one is struggling and actually tells you it’s been a really hard day or week, that isn’t them being negative or giving up – it’s just their honest reality. Try not to match these statements with things like “but you look great… no one would know… I think you’re doing so well”. These types of things can be quite deflating no matter how good your intention is. If someone wants to say what they are experiencing with illness is hard or worse right now, let them. Avoid bringing the discussions to appearance, especially because chronic illness is most often invisible to others. Give them the opportunity to be transparent about their disorder.

• Try to avoid questions like – “Are you better? When will you be better? How long does recovery take?” Think about what you are really trying to ask and frame it gently. The words leaving your mouth are only leaving said mouth for a second, yet they will stay with us in our minds all day or week if they sit uncomfortably.

• Mostly I would say research and ask questions to better your own understanding of the illness. Sit with the person and allow them to explain exactly what their life looks like now. Ask how their day has been; what task was hardest, what task was easiest, if there is anything you can do for your family member or friend. You will always broaden your own knowledge of their circumstance this way. 

Healing isn’t a solo task as much as we might think it is. So get on-board and heal with your loved one. Support them, listen to them, don’t question them, be patient and kind, always.

Taking control

Whatever you’re going through right now, if you need to explain it to others or just feel more at ease with it yourself, work out how you want to term it. Call it what it is for you. Your understanding of your circumstance is unique and ultimately only yours to make a judgment on.

I hope this has resonated with you or you can share this with someone who needs it. If you want to hear more from me as I explore this healing process, follow along here, on my socials or subscribe to my email list! I’ll keep sharing as much of what I’ve learnt as I can. I hope it’s helping you. 

Thanks for being here.

Leora