How did the chronic disease change me – and how did I stay the same

17 years ago, on March 2, 2002, I suddenly became sick of what I thought was flu. In a story that is probably familiar to most people who read this, I did not know that my life had changed dramatically, forever divided into "Before" and "After." I've gone through all the usual steps: looking for a diagnosis, disbelief. that I was again sick, anger and frustration at not being able to do what I had to do, and confusion that I felt good on certain days and weakened on other days. When a new primary care physician diagnosed me correctly with chronic fatigue syndrome (ME / CFS) a year later, I was relieved both to have a name for my illness and to also horrified to be now "chronically ill".

Although there is no cure, over the last 17 years, I have gradually found, with the help of my doctors, various treatments and management techniques of ME / CFS, each bringing small profits, adding enough improvement over time so that I can live my life again. I am writing, taking care of my family, meeting with friends, and dealing with the huge and complicated mess that is my illness (and my son's too). I am not going very well and the recovery of EM / CFS is still a dream, but I work pretty well compared to where I was. I live an active and happy life and I do things that I like, even with restrictions.

It's not just my physical body that has changed, though. Living every day within the confines of chronic disease for nearly two decades has also changed, although my essence is still the same. Some of these changes have been difficult, even heart-wrenching, but most of them have been positive, things that I would never have experienced had I continued my hectic life before illness.

How has Chronic Fatigue Syndrome changed?

I am more compbadionate.

It's one of the most striking changes and something I've seen in my two sons as well. Having experienced such enormous challenges ourselves, compbadion for others comes naturally. Suffering from a debilitating illness that is usually invisible to others has made me realize that everyone I see every day probably faces their own challenges that others do not see. The disease has made me a nicer and more empathic person. Likewise, I see my sons reaching out to help others and I am proud and grateful whenever someone tells me that my sons are so kind (which happens often!).

I became more patient and calmer.

Like many people, I spent my days thoroughly. I went through the list of tasks every day as if I were racing, and I put a lot of pressure on myself and my family to do everything and not miss the opportunity. Chronic illness forced me to slow down and calm down, which was good for all of us! Even though I have a lot of work to do, my body insists that I stop to take a nap after lunch every day, that I put my work at 7 pm and that I go to bed early. With little time and energy, I simply can not does everything. I find that I am no longer as frustrated and angry as I used to be, and that I am more patient with others (probably because I am more patient with myself). After having faced so many crises and often forced to change projects at the last minute, our family reacts more serenely when problems arise. We have lived so much together that we know that when something goes wrong, we will get out of it, and it is not the end of the world.

I need loneliness and embrace a calmer life.

I have always been very sociable and I love to mix with people and do things … but now, this kind of social interaction makes me tired. I am able to tolerate and enjoy social activities with close friends or family once or twice a week, but I also find that I want to spend quiet time alone between the two. Interestingly, it helped my husband and I create more connections because he is a natural introvert. I used to be frustrated with her desire to stay at home, always fearing we were missing something. Now, I'm kissing him as much as the timeouts. We both look forward to our evenings together when we spend two hours watching our favorite TV shows, then an hour to read before going to bed. I do not just accept this necessary silent routine – I like it.

I became closer to my close family.

For several years, three out of four of us were seriously ill, only my husband was left to take care of us. This experience, although horrible at the time, brought us together in a unique way. We spent a lot of time alone and confined to the house – just us, watching movies or television, reading books and playing silent games. We always dined together, spent our quiet weekends camping, and had a three-week trip with our camper every summer. Now our sons are in their early twenties and are busy with their own lives, but they still love going home and spending time with us. The disadvantage is that a gap has formed with the extended family, most of whom have never tried to understand our diseases, which heals only slowly and incompletely.

I have become less perfectionist (I am still working on this one!).

I've always expected a lot from me and others. Chronic fatigue syndrome has forced me to lower my standards, which is a good thing! Friends come and the house is congested? Oh, well, that's why they are friends! I can not go to the store today? I will try again tomorrow and we can find Something here for dinner. Time and time again, I had to settle for less than perfect, and that made me realize that everything was fine. I am not yet completely there; these perfectionist tendencies still push me in many ways. But my illness sets me limits that can not be crossed and it's good for me.

How I am always the same

With all the changes that chronic disease and chronic fatigue syndrome have caused, I recognize that I am always me. In fact, my illnesses have helped me explore some parts of me more deeply. I love to read since I was little and now, this occupies an even more important place in my life. I can embrace the downtime as a chance to read. It is always important for me to help others and to feel that I have made a difference, and now, as a writer living with a chronic illness, I have this chance. Chronic illness has forced me to make changes in my life, many of which are positive, but this essential core that makes me what I am has not changed. I am always me, a mother, a woman, a friend and a writer. And, I take advantage of my new normal while I continue my recovery me / cfs.

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Suzan Jackson is an independent writer who has been ME / CFS for 16 years and also has Lyme disease. His two sons also had EM / CFS 14 years ago, but one of them is now fully recovered after 10 years of benign illness and the other just finished his studies, with EM / CFS and three infections transmitted by ticks. She writes two blogs: Living with ME / CFS at http://livewithcfs.blogspot.com and book by book to http://bookbybook.blogspot.com You can follow her on Twitter at @livewithmecfs.