There is still much to learn about chronic illnesses, such as ME/CFS and fibromyalgia. Unfortunately, this means that there is no straightforward treatment plan available to move patients towards better health. Instead, doctors and patients need to explore various treatment options to see which, if any, will help.
I have read many recovery stories over the years and one thing I have come to learn is that no two accounts are the same. Each individual carves their own path towards recovery and the strategies they employ are unique to them. Over months or years, these individuals have experimented with a number of different approaches, going through a process of trial and error, until eventually they have discovered what works for them.
As someone going through this at the moment, it is undoubtedly a difficult process. From speaking to others, I know that as much as we learn not to pin our hopes on a treatment being successful, it is ultimately the hope of feeling better that encourages us to try a new treatment in the first place. This means when things don’t work out as we had hoped, it comes as a blow.
When Our Hope Is Challenged
I’ve recently experienced this first-hand. I decided to try a new treatment — hyperbaric oxygen therapy — to see if it would help to move me forward in my recovery. Sadly, for me, it was not a positive experience. Instead of my health improving, I experienced a setback. Although this treatment has proven to be successful for some, it wasn’t for me. It is difficult enough when a treatment does nothing to help, but when it feels like it has knocked you backward, it’s even harder to take.
I found myself left wondering if I would ever get better or if I had simply progressed as far as I was ever going to.
I have to say, this wasn’t a new experience for me; I have been in this exact place at times in the past. Over the years, I have experimented with various different treatments: traditional medications, alternative therapies, supplements, diets, lifestyle changes, you name it. Some have been helpful, but many have not. Every time things don’t work out as I had hoped, my initial reaction is that I want to give up; that I have had enough. When you have hopes of feeling better and it doesn’t happen, it’s upsetting, to say the least. I’d be lying if I said my mental health doesn’t take a hit.
Although those of us with living with chronic illness are incredibly resilient, sometimes we will go through phases where we struggle to pick ourselves up. And I’ve learned that that’s perfectly okay; it would be unrealistic to expect anyone to simply put it down to experience and move on.
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At times like this, I have learned that the best approach is to allow myself to express the emotions I am feeling. I give them room and sit with them for a while. Sadness, frustration, anger and hopelessness were all feelings I experienced this time round and they were all very valid emotions.
During this time, I also lost the motivation to do many things that I usually enjoy, but I tried my best to employ strategies that have helped me through previous setbacks. For me this includes things like rest, staying hydrated, eating nutritious foods, gentle movement, spending time outdoors, practicing gratitude and ultimately trying to find peace with my situation. I don’t pressure myself into doing anything I don’t feel up to. And I also like to consciously remind myself that my success rate for getting through setbacks has so far been 100%. Though it is difficult, I aim to trust that I will get over this one too, even if it doesn’t feel like it at the time.
I also tried to place my focus on each day as it came and steered my mind away from thinking too much about the future. Although I initially allowed myself to debate it, I learned to appreciate that there was nothing positive to gain from agonizing over the question, “Will I ever recover?”
By allowing myself unpressured time to heal — both emotionally and physically—I’m pleased to say that I have found myself picking up again. With this, hope is slowly beginning to reignite.
I know it will take time until I feel open to trying a new treatment again, and perhaps I will decide against doing so. However, I don’t have any regrets surrounding treatments that have proven to be unsuccessful for me. I have learned to appreciate that we are all individual and what works for one, won’t necessarily work for another and vice versa. Instead, I like to give myself credit for being open and willing to trying something new. And I know had I not been, I would only be left wondering “What if?”
I know I am not the first to have experienced setbacks like this and sadly I won’t be the last either. Rather than thinking negatively about my experiences, I have made the conscious decision to channel my focus into something more positive. This isn’t easy to do and it is admittedly a work in progress.
However, I have found that reflecting back on other people’s recovery stories has been helpful for me. Through them I am reminded that the road to recovery is a rocky one; it involves a lot of experimentation, trial and error. Therefore, instead of seeing my experiences as failures, I am choosing to see them as a step towards what will eventually help me.
That may sound hopelessly optimistic — and perhaps it is — but it is the coping tool I am choosing to employ. I didn’t get a say in what happened to me, but I do get a say in how I choose to handle it. Having crossed one more thing off the list, I am choosing to visualize myself as being one step closer to the strategy or treatment that will eventually help me to recover. This is something that is helping me to move forward.
My mantra over the past couple of years has been the phrase “patient persistence will pay off.” I am holding onto the hope that one day I will be able to say that it did. And I hope the same will one day be true for everyone else suffering.
This article was first published on ProHealth.com on June 14, 2016 and was updated on January 28, 2021.