Need VS Want: Striking the balance with M.E/CFS Recovery

I recently caught myself reflecting on a rather large decision “Hmm, another one based on what I need rather than what I want in this moment” and I was able to have a little laugh to myself. This shift in perspective away from victim and resentment toward patience and light-heartedness has been major in my recovery.

Without connecting to my highest priorities and desires I can absolutely say that overcoming these illnesses would be a very dull reality. If I’m not careful it can be easy to get caught up in the moments of immediate gratification around what I think I want, what will make me feel good in the moment, and to lose track of the bigger picture: my complete recovery and independent unattached happiness.

The last eleven months (that was a scary calculation quickly made on my fingers just now) have been without a doubt the most challenging and painful of my life, but they have also been the most positively life changing.

When I became debilitatingly ill I also became extremely clear on my priorities and goals as well as the behaviours that would deliver them. This wasn’t a new concept to me; goals and aspirations have been at the driver’s seat to my life and quite possibly played an integral role in my diagnosis of Chronic Fatigue Syndrome, Leaky Gut Syndrome, Parasites, Anxiety, and Depression.

I remember sitting in my career counselor’s office in the early stages of my final year of high school sharing with her my highest goal yet: studying a Double Degree of Law and Business in the following year. There was an initial panic and pain I felt through my upper body when she told me that I should consider an alternative option. Based on her state of the art computer program, my estimated enter score wasn’t going to get me there. Years later I handed my resignation to an employer for whom I’d been working with in property sales. They were extremely concerned with my decision to progress my career elsewhere and shared this with me by telling me, “People either have it in them or they don’t. You just don’t have it”. In the case of my study option, I was accepted first round into my first preference of a Double Degree in Law and Business. With the former employer, once taking that step with a new firm I was awarded the ‘Rising Star’ in my first year and the ‘Young Gun Highest Generator of Listings’ and ‘Young Gun Highest Dollars Generated from Listings’ for every quarter in the following year.

Goals? I had them down baby! Success and my addiction to achievement were engrained into the person I was. Only it wasn’t who I was, it was only what I did.


So what was so different about the clarity and cut through of setting goals and behaviours around recovering from these chronic illnesses? First was the severity of the outcome. Secondly, how intimately I had to question my own character. Once I accepted how unwell I was, both physically and emotionally, and these intertwine, it was extremely scary. Being stripped of my health has at times made me feel the most vulnerable and unworthy I have ever been in my entire life. Lastly was the pain. It surfaced immediately in setting these recovery goals and continued throughout the commitment of implementing them.

What I ‘wanted’ in the foreseeable future was no longer of significance. And let me clarify here that what I am saying is that other than my number one priority of restoring my health and happiness, nothing else that I wanted in the immediate future could come into play. In the past my goal setting had been based around emotions of excitement, adrenaline, positivity, and high energy. They were crafted from ideas that would build upon an already successful foundation – prior achievements. Eventually they may have led me to a fork in the road that required a painful sacrifice, but this pain certainly wasn’t front and centre at the time of enthusiastically penning down the goal. These goals were different. These goals were about what I needed, not what I wanted.

Now I have a conflict in my perspectives here playing out in my head. My mindset is now so far evolved from this time that I am sharing with you that it goes like this: achieving any goal doesn’t come only with excitement, positivity and fun tied together in a nice big bow; that accomplishment of any nature doesn’t come without some sacrifice, regardless of how small, there is always an opportunity cost; if your focus is on one thing, it can’t be as intensely on another, it may result in a sacrifice so minimal in size that it goes completely unnoticed on a conscious level or it may be a sacrifice that is large, causing extreme pain despite your willingness to forgo it and knowledge that it’s absolutely in your best interest to do so. This is where the need VS want argument became the little coach in my head and provided me with the cut through I required.

I didn’t want to remove myself from my career. I didn’t want to evaluate each of the significant relationships in my life and remove or adjust those which weren’t supportive of my highest needs. I didn’t want to uproot my life and move 7469km to a foreign non-English speaking country where my dad could help to care for me. But I did want to recover my health. More than anything else that was my highest ‘want’. So my shift of thinking from, ‘I don’t want to do this’, to ‘I don’t want to do this but I need to do this in order to value my highest want’ was key. These sacrifices of financial independence, injecting energy into unhelpful relationships, and forgoing my desired lifestyle for a little while, were the sacrifices required to achieve my new and highest goal. Each time it seemed too hard, too painful, too dark, or too defeating, I had to remind myself of this. My internal dialogue would move through the motions of, “this isn’t fun, in fact it’s f**king shit, but what is life without health? What is achievable without my health? Do I want to prolong the time spent extremely unwell and compromised, or do I want to move through this in the most efficient way possible? Endure the short-term pain for the long-term gain?”

Decisions made in the moment of extreme pain, whether physical or emotional, are fantastic for delivering short-term gratification and relief. They numb the pain. The problem is that they can be as detrimental to the end goal as they are tempting and easy to make. I could push my body to breaking point on a 10 minute walk and not be able to move from bed for a week, or I could suck up the frustration of walking only 2 minutes at a snail’s pace each day, which was what my body could manage and maintain. I could instead shift my focus to gratitude for the things I did have, that I could do. I wasn’t capable of the strength required to carry my doona from the bedroom to the couch, but I was lucky enough to have access to clean bedding and someone who was happy to carry it for me. For five months I wasn’t able to read more than one page of a book without the consequential week-long migraine setting in, but I was able to relax into the habit of using audio books for short periods instead. For four months if I wanted to leave the house and move more than a few hundred meters I had to do so in a wheelchair, but I did (on most days) have the strength to sit in that wheelchair and the freedom to enjoy what it allowed me to manage. In these moments it was imperative for me to remember “I don’t have my complete health, but I am not terminally ill and in the near future I will regain my complete uncompromised health.” And I was and I am right.  For the last month I have successfully conquered a seven hour day back at work each week with 25 minutes travel either side: writing, creating, and working with only minor symptom flares. I’ve enjoyed yoga, light-weight training, and fast-paced walks for up to an hour. No more week-long headaches without any sign of relief. No more spinning rooms, nausea and crippling fatigue. However, if I were to stray from the behaviours that have put me at this stage of my recovery, try to return to full time work hours, or power walk for two hours, I can be sure that a degree of those symptoms would return. It would be a short-term hit of satisfaction that would in turn delay the overall process of achieving my goal – my complete recovery and independent unattached happiness.

I’ve learnt that goals that transpire into outcomes aren’t conditional, especially not when it comes to health and happiness.  They’re not about when you have time, when it seems right, when you feel like it, or when it might be easier. It has been staying true to my goal and my values at the hardest and darkest times, and implementing the activities despite having no desire to do so, that has enabled my recovery so far.


Guest Post Written By Gemma Hanley (CFS Health inner circle Member)

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