Wednesday, September 09, 2015

Riding the Chronic Illness Roller Coaster

This summer, I began writing articles for the ProHealth website (an excellent source of information on all aspects of our illnesses), for their Inspirational Corner. This article was published on July 25: Riding the Chronic Illness Roller Coaster (reprinted here with their permission):

Riding the Chronic Illness Roller Coaster

The song Helter Skelter (originally by The Beatles) often goes through my mind when I go from feeling fine one day to being badly crashed the next. It resonates with my sense of climbing up only to find myself on a ride back down again. For those of us with ME/CFS and fibromyalgia, life is like a rollercoaster. Not everyone with ME/CFS or fibromyalgia experiences physical ups and downs – some people feel about the same every day – but all of us living with chronic illness deal live with an emotional rollercoaster. Kubler-Ross famously identified five stages of grief: denial, anger, bargaining, depression, acceptance. What many people don’t realize is that these stages don’t occur linearly and aspects that you think you are done with (like anger or depression) can recur over time.

I have found this to be very true in my own life. I certainly experienced all of those stages of grief at the beginning of my illness and even got stuck in depression for a while. For the most part, I feel that I am fully in acceptance mode now, 13 years later. However, once in a while, those other emotions still appear and surprise me.

I am generally a very happy, optimistic person. That’s just my natural temperament, and I am usually content with my life, even with chronic illness. I’ve made peace with my new normal and accept my limitations; I’ve learned to find joy within my restricted life. Every once in a while, though, even after 13 years, despair will just hit me with the force of a tidal wave. I’ll suddenly feel depressed, abandoned, and like a failure. I’ll cry and grieve over all the things I can no longer do. This dark state of mind might last for a day or two and then I gradually come back to my normal happy self – riding the emotional rollercoaster.

I’ve learned over the years that these sudden storms of despair often accompany a physical worsening of symptoms or a crash. That tells me it is tied to the biochemistry in my brain. It helps a bit to understand this, though it is hard to be logical in the midst of that darkness.

So, what helps when I hit bottom? The first key is to recognize that what you are feeling is normal and natural and will eventually pass. This is easier said than done! Those feelings are very real when you are in the midst of them, and it can be hard to remind yourself that you are at the mercy of changing biochemicals. However, reminding myself that these are transient feelings that will pass, just as they have before, can help immensely. I think of it as riding the wave – allowing myself to feel what I am feeling, while acknowledging that it is temporary.

Over the years I have developed some other coping mechanisms when despair hits:
·      Think about/write down what you are grateful for. It helps to remind yourself that things aren’t as black as they seem, that you still have some positive things in your life – family, friends, good books, birds singing outside your window. I wrote previously here about keeping a Joy Journal [LINK?] – writing down each day the little things that brought you joy – and that can help now, too.
·      Reach out to others. These illnesses are isolating anyway and even more so when you are feeling emotionally low. If you have understanding friends or family, tell them you are feeling down. Just sharing those feelings with a loved one can help (make sure it is someone who can be empathetic and not make things worse). You can also share your feelings online with others who you know will understand, in discussion groups or Facebook groups for your illness. For me, that often means writing a blog post, and I am always comforted by the outpouring of support and understanding when I do admit to feeling down.
·      Take care of yourself. Focus on your own needs and do things that you enjoy: read a good book, watch a favorite TV show or movie (a funny one is even better!), take a nap, listen to an audiobook. Do whatever brings you comfort.
·      Be kind to yourself. If you are going through a bad period emotionally (or physically), don’t try to be productive and get things done or push yourself in any way. Indulge in comforting rituals, like a favorite herbal tea, a piece of dark chocolate, staying in bed. Don’t berate yourself for feeling down. Let others take care of you.
·      Help others. It may sound counter-intuitive, but helping other people can be a great way to help yourself. It feels good to be of use or to know that you helped someone. Reach out through your social media networks, chronic illness groups, or to close friends or family. Helping others has been one of the biggest unforeseen benefits of our illnesses in my family.

If none of these kinds of things work or you are stuck in a serious depression that lasts more than a few days, seek professional help. Start with a local referral service or search online. Look for a therapist who has experience with chronic illness (call the office and ask that question before you book an appointment). If you are too sick to leave the house or can’t find anyone locally, look online – there are therapists specializing in chronic illness who will work with you via Skype. In my first few years of chronic illness, I struggled to adjust to my new life of limitations; when my two sons also got sick, I sunk even deeper into despair. I found a wonderful local psychologist (through my husband’s workplace referral service) who had a grown son with ME/CFS. She understood what I was going through and helped me immensely.

Most of all, I have learned to focus on one day at a time. Considering a lifetime with this illness is too overwhelming. Thinking about all that I want to do with my life in light of my current restrictions is just too depressing. It’s better to focus on small goals, on getting through each day, even each hour, and taking care of myself now. Those black feelings will come sometimes, but I know they will also pass.

Suzan Jackson 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. She writes two blogs: Learning to Live with ME/CFS (with an emphasis on LIVE!) at and Book By Book at 

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