The journey of recovery from chronic illness is often long and arduous, requiring commitment, tenacity and unwavering resolve. I see people who make this journey, in fact my “day job” is to walk this journey with people, designing the treatment plans that I think will get them better the quickest, with the least side effects and bumps along the way. One this I have seen is how profoundly mindset impacts their journey, and I believe that there are three stages of recovery from a mindset standpoints. These are the phases I see relating to mindset in chronic illness: Victim to Survivor to Thriver.
It’s so easy in the early days of illness to feel like a victim. Especially in my field, which is chronic Lyme disease, many people have horrendous stories of mistreatment, doctor abandonment, misdiagnosis, being told they’re crazy and that their symptoms are all in their head, being yelled at by doctors, being thrown out of doctor’s offices, being turned on by friends and family members, marriages falling apart, estrangement from children, massive financial struggle, medical debt, bankruptcy … and the list goes on. This could be true for any chronic illness, although certainly Lyme does seem to have more of a stigma around it, and seems to lend itself more to these scenarios.
But guess what? While all those things might be true, and might have happened, and might have been horrible … wallowing in them will not help you get well. You must find a way to process, work through and let go. Forgive, detach, release, overcome. It’s in your best interests.
I remember so well a conference in Sydney a few years ago that I was invited to speak at. After the morning presentations there was a Q&A session with all the presenters from that day – all experts in Lyme disease treatment, all committed to helping people recover from chronic Lyme. There was one lady in the audience who stood up and ranted for 10 minutes about the treatment that she had received, the anger she felt, how unfair it all was. Other audience members were encouraging her to stop talking, the emcee of the event was trying to interrupt, but she went on, and on, and on. Clearly she was angry, and many would say justifiably so. But here’s the thing. That was a missed opportunity – she had five Lyme-literate doctors ready to answer questions about treatment, nutrition, medications etc – anything that could help her and other people to get better, and yet she couldn’t get past the past enough to be present in that moment to listen and learn.
Please don’t get me wrong – I have great compassion for what people have been through on their health journey – I have heard some horrendous stories, and feel deeply for people for what they have been through. It’s not that I don’t get it, or that I’m expecting people to just forget it and act like it never happened. What I am saying is, you can’t be a victim and get healed. To be healed, it is imperative to have a positive mindset, and look with a positive outlook towards the future.
The survival phase of recovery means that people are getting to a point of stability. It might be that they are starting to have more good days, it often means that they can get back to basic daily activities that they had to give up, such as managing the kids’ schedules, school pick ups etc. It’s still a point of “getting by”, but things are better, not as desperate.
From a mindset standpoint, people in the survivor phase are getting by. They still struggle, but are doing the best they can. It generally takes all their energy just to get through the day, but they are getting through the days, and they are aware of that now. They are not looking backwards, but nor are they really well enough to look forwards – it’s very much day-by-day. Hopes and dreams still feel a long way off, but even to look to the future takes too much energy and doesn’t necessarily feel realistic. Let’s just get through today, and then tomorrow we’ll do the same.
This is a natural phase of recovery and does indicate that things are getting better. Even just being able to overcome the emotional elements of the past is a good sign of progress. People here aren’t spending time in regrets and painful memories (even if those things still exist), they are more in the here and now, even if the here and now is still a struggle.
The phrases I hear in this phase are “I’m ok,” “I’m better than I was a year ago,” “I’m having more good days,” “I’m getting better but still have a long way to go.”
This is the phase everyone wants to get to, moving into remission and getting back into life. Good days are the norm now, and people are able to look forward again, reconnecting with their passions, dreams, and plans. I have patients who at one point would drive off in their car and then couldn’t remember where they were going so they had to turn around and go back home again, patients who never thought they’d be able to function normally again, let alone thrive. And yet, here they are today, going back to school, writing PhD dissertations, home-schooling their kids again. There are many different manifestations of this – another patient is now playing softball three days a week after over a decade of not being able to be active, and for him that is a major passion, and gives him a ton of pleasure. Another is now living abroad, soaking up all Europe has to offer because they can.
I’ll tell you a secret though – one of the things that moves recovery along fastest is to have the mindset of a thriver every step of the way. As my dear friend and well-esteemed colleague Sandy Berembaum, LCSW said:
“People can’t be victim and a problem-solver at the same time, it has to be one or the other.”
With limited energy and capacity, staying focused on the positive, on the things that can help right now, and on finding the solutions to problems, is crucial. Then once a point of stability is attained – ie the survivor phase – people can start looking to the future and reconnecting with their hopes and dreams.
I believe that it is crucial for people to have support on their team that facilitates this passage – whether it is a social worker, marriage and family therapist, coach, psychologist, spiritual counselor – there are many well-qualified people. But given the importance of this part of recovery, mindset simply must be considered essential, not an optional add-on that pops up on good days and disappears when the going gets hard.
I hope that those of you who are reading this who might be in the midst of chronic illness right now see this as an opportunity. Being in the victim stage is not inherently bad – it just won’t help you to get better. And as I said, you can trust me when I say that I get how bad things can be, and I can get why you have that anger and disappointment and frustration. I do get it. Now it’s time to put that aside and focus on your health and your recovery. If you need help to be able to do that, please reach out to a counselor or partner of some kind in your journey, and ask for help. I have seen so many people go from victim to survivor to thriver – I know it’s possible, and it’s possible for you too.