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How to Balance Hope and Acceptance with ME/CFS

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June 4, 2003

When will I stop thinking of my pre-illness life as “normal”? I guess that would be the sign of true acceptance. But I’m not sure I want to be that accepting! I don’t want to forget “the old me” (what I still think of as the real me).

It’s a constant internal struggle. If I truly accept this illness as part of me, does that mean I give up all hope of recovery? Yet, if I refuse to accept my new limitations, then I am sentencing myself to continue relapsing.

I wrote that entry in my journal a little over a year after becoming ill with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), shortly after being diagnosed. I was struggling to accept this “new normal” and to come to terms with the possibility of never recovering. Now, more that 15 years into living with ME?CFS, I am happy in my post-illness life, though balancing acceptance and hope is still an ongoing goal.

As I wrote in that journal entry, there seems to be a dichotomy between the two: Does accepting your current situation mean you are giving up hope of ever getting better? Does continuing to strive to improve your condition mean you will keep relapsing? It’s difficult at first, but acceptance and hope can co-exist peacefully. Here’s how:

Hope and Acceptance with Chronic Illness

1. Let go of the past.

A big part of acceptance for me was giving up my ideas of who I was based on what I could do. I had always seen myself as a strong, fit, independent person, so living with ME/CFS symptoms was difficult. I had also enjoyed a satisfying professional career in engineering and identified myself as a leader. Although I had voluntarily left my career before chronic illness in order to spend more time with my family, I always intended to return to it after a couple of years. I missed my professional life and that sense of being capable and self-sufficient. It took me some time (and professional counseling) to let go of that identity and recognize I was still OK without it.

I also struggled with my identity as a mother. I used to spend a lot of active time with my family — hiking, playing soccer with the kids, and taking care of the house with my toddler son by my side, cleaning, playing, and running errands together. Those first few years after becoming sick, I felt horribly guilty that I couldn’t be the mother I wanted to be. I finally realized, though, that it didn’t matter to my kids; they loved me just as much reading with them, watching videos together, or playing quiet games. They loved me because I was their mother, and I gave them love, not because of what I could or could not do.

Remember, you are not defined by what you do. You are still the same person inside, even if you are no longer working or involved in other things that used to be linked to your identity. Allow yourself to mourn those lost identities or opportunities, to see the essence of yourself without them, and then move on.

2. Live for today and focus on the positive.

Gradually, I began to create a new life for myself. When my youngest started school, I resumed what I had started after leaving my job – freelance writing. I don’t make much money and my energy and time are limited, but it’s work that I love, and I can contribute a small amount to our finances. Most importantly, it’s work I can do on my laptop from the couch!

I focused on things that I love that I could still do with ME/CFS, like reading, blogging about books, being outdoors, and watching TV and movies with my family. I started a Joy Journal to help myself focus on the good things in my life.

You can do the same. Focus on things that give you pleasure that fit within your new life, perhaps even finding a new interest, like knitting or reading classics. Teach yourself to recognize small joys in your life and to feel grateful for what you have. Start a journal to record daily joys or gratitude or share them on social media (use #GratefulToday). Connect with other people online or in real life with a similar positive focus.

3. Don’t fight against your body.

In the early days, my condition was very up and down which made acceptance harder. Some days I felt good and returned to normal activities, only to feel horribly sick again and unable to get off the couch for days or weeks. Just learning about aspects of ME/CFS treaments like post-exertional malaise (aka exercise intolerance) helped. I began to record my activity level each day, making note of what caused a “crash” and what I could tolerate. As I learned what my limits were, I had fewer bad days and more OK days.

Try to live within your limits as much as you can. Keep simple records of how you feel and your activity level each day to figure out what makes you worse and what you can tolerate. Listen to your body and rest as much as you need to.

4. Feed hope.

The other side of the coin, hope, came more easily to me since I am naturally an optimistic person. I did go through some dark years of despair in the beginning, though, especially after both of our sons also got ME/CFS. I saw a wonderful psychologist who specialized in chronic illness; she helped me tremendously with both acceptance and hope. And I read a life-changing book called The Anatomy of Hope by Dr. Jerome Groopman that I recommend to anyone living with chronic illness. It defines what real hope is and helps you understand how to hold onto it, even in the face of frightening odds.

I put my scientific background to use and read all the research on ME/CFS that I could find. Research has come a long way since the early days of my illness, and every new study that comes out – focusing on blood tests, physiological aspects of immune dysfunction, infections, genetics, and more – gives me hope that we are getting closer to some real answers for patients.

I also searched relentlessly for ME/CFS treatments to help my sons and I, often based on those research studies. We have discovered that although nothing helps a lot, there are a lot of treatments that each help a little, and those add up to considerable improvement over time. Each improvement, no matter how small, further feeds that sense of hope.

You can feed hope, too. Read research summaries, visit blogs and websites like this one to stay up-to-date on the latest news, and look at each new piece of information about your illness as another step closer to a cure or at least effective treatments. Keep trying new treatments (which often requires some trial and error and a lot of patience!). Just better understanding your illness can lead to improvements in your quality of life.

Accepting – even loving – your life as it is today isn’t giving up. It’s making the best of today, while holding onto hope of an even better future.

This article was first published on ProHealth.com on March 10, 2016 and was updated on December 17, 2019.


Suzan Jackson, a frequent ProHealth contributor, is a freelance writer who has had ME/CFS for 13 years. Both of her sons also got ME/CFS, but one is now fully recovered after 10 years of illness and the other is in college, also dealing with three tick infections. She writes two blogs: Learning to Live with ME/CFS (with an emphasis on LIVE!) and Book By Book. You can follow Sue on Twitter at @livewithmecfs.

 

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