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Learning to Live with Fibromyalgia – 5 Personal Insights

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Insights from Living with Fibromyalgia

After months or even years of searching for an answer, receiving a fibromyalgia diagnosis can bring with it an initial sense of relief. It’s reassuring to finally understand why you have been feeling so terrible, and to know that it is not all in your head as some doctors may have suggested. However, a diagnosis is not the conclusion to your story with fibromyalgia. In fact, a diagnosis signifies the start of a new journey.

Although I was initially relieved to receive a fibromyalgia diagnosis, what followed was months, if not years, of learning to accept it. What I did not appreciate in those early days was the fact that this illness is for life, and to live well with it you must adapt. I naively thought that I would be able to overcome fibromyalgia and continue with my life as though nothing had happened. Looking back, I can now see that I was simply in denial, which coincidentally is the very first stage in the road to acceptance — a road with a multitude of bumps and unexpected turns along the way. I would say that acceptance is very much an ongoing journey rather than a destination. However, I have learned many things along the way that helped me to feel more accepting of my illness and the limitations it places upon me.

5 Important Things I Learned Through Living with Fibromyalgia

1. The Importance of Forgiveness — Specifically Forgiving Myself

As I mentioned above, I tried to continue with my life as though nothing was wrong with me in those early days after I first received my diagnosis. This turned out to be an unhealthy mentality and for a long time, I held a lot of resentment, frustration and anger towards myself. All because I struggled to do certain tasks, some of which had become downright impossible for me to achieve. However, the longer I lived with fibromyalgia, the more I began to understand the impact it had on my life. I rationalized that I did not want to continue my life with this feeling of resentment towards myself. I had no choice about having this illness, but I did have a choice regarding how I handled it. I could either live my life with fibromyalgia and continue to be resentful, or I could make the most out of a bad situation and try to be as positive as possible.

It took me quite a long time, but I began to learn the importance of forgiveness. I have realized that it is neither my fault, nor is it my choice to live with the limitations fibromyalgia places upon me. Giving myself a hard time over it is incredibly unfair. I have, therefore, learned to practice forgiveness on myself. A positive from this is that I have been able to let go of the guilt and resentment I was holding onto and I feel much happier in myself.

2. Accepting Help Is Not a Failure

Allowing other people to help and assist me was something I really struggled with in the initial stages of my illness. It felt like pieces of my independence were being taken from me, and I resisted it for as long as I could. I would struggle on and try to be super woman, but unfortunately I am not blessed with superhero powers; I’m a woman with a chronic illness and I need help. What I have since learned is that others helping me does not make me a failure in any way, shape or form. It makes me sensible.

Unfortunately, I do not have boundless amounts of energy, and each day I only have a limited amount of energy to get me through. To get by and to enable me to do some of the things I enjoy, I simply cannot do it all. I need help with many things, such as cooking and cleaning. When I can repay a favor, I do, and I feel good about that. I have realized that people help me because they genuinely want to and because they feel good about doing so. My life is much better now that I accept help, as I am no longer constantly exhausted or in excruciating pain from overdoing things.

3. You May Lose Friendships, but the People Who Love You Stay Around

Fibromyalgia can be very isolating at times, and I am known to become a bit of a hermit when I am suffering from a flare. Like many, I am no longer able to attend every social event. I have spoken to people who have lost friendships as a result of their illness, and I have admittedly lost contact with some people, too. Although friendship has to be a two-way street, there needs to be a level of understanding for people with a chronic illness like fibromyalgia, and an appreciation that we may not be well enough to do everything we would like to. Without this appreciation, a friendship can become toxic.

Saying no is not always because we don’t want to do something; it is often because we simply can’t. So long as we are open about our struggles, our friends need to be understanding of this. I used to put up walls and try to keep my illness as hidden as possible. The reason I did this was because I didn’t want people to think of me any differently. I did not want sympathy, and I didn’t want people to see my illness before they saw me. However, I have realized that the more open I am, the bigger my support network becomes. I have learned to cut ties with people who cannot accept the limitations of my illness and instead focus my energy on the people that do. Fortunately, the people who genuinely care and love you are the ones who are always there for you and do not judge.

4. Your Self-Worth and Identity Are Not Defined by Your Work

One of the biggest struggles I have faced over recent months has been my inability to work. My job, which is demanding work, has unfortunately been beyond my current level of health. The fear of being unable to return to this line of work is very much at the forefront of my mind. Admittedly, the thought of giving up work due to chronic illness is daunting. I previously worried that having to give up work would leave me feeling as though I had lost a part of my identity and self-worth. This of course is not helped by social pressures. However, I have come to realize that a job is only a part of my life, not a part of who I am. I am a loving wife, caring daughter, photographer, writer, and I am quite crafty to boot! I am so much more than a job and have a lot to offer other than work. My self-worth and identity are not defined by a job. I therefore will not allow anyone to make me feel as though I am less of a person due to my inability to work.

5. Life Doesn’t Always Go As Planned, but That’s Okay

As humans, it is in our nature to plan ahead and imagine what our life will look like. We are encouraged from an early age to think about what we want to do in the future. I think I can speak for everyone when I say that fibromyalgia was never featured in that life plan. For a few fortunate people, illness may be a short bump in the road, but for many it will change the journey completely. This isn’t necessarily a negative thing, even though it may seem like it at the time. I do believe that everything works out in the end; I have to — it’s what keeps me going. However, I have realized that the end result may be vastly different than what I imagined for myself, though I am learning that’s okay. I no longer know what is around the corner for me. However, since falling ill, I’ve discovered new passions, with writing being just one, and I’m excited to find out where life takes me.

This article, originally published on ProHealth on April 22, 2015, was updated on March 3, 2020.

About the Author: Donna Grant was diagnosed with fibromyalgia in 2013 and subsequently began blogging about life with chronic illness. She shares her journey and how she has improved her life with fibro and other chronic illnesses, as well as inspirational posts, on her website and blog February Stars.

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5 thoughts on “Learning to Live with Fibromyalgia – 5 Personal Insights”

  1. foreverhopeful says:

    Thank you Donna, for reminding me of facts that I know after all this time but that myself and countless others forget at crucial times just when we need to remind ourselves of these very lessons. Thank you again – I have printed the article out and will use it to remind myself that things are not so bad and I am not the horrible, useless person I sometimes feel I am.
    We are all worth more than we realise and I now always remember to think of 3 things/events/whatever to be grateful for that day before attempting to go to sleep, and it does indeed help to make me feel more positive.

  2. Redhorse says:

    Thank you for your article and I am so happy you are getting married. I have had Fibromyalgia since 1984 and no one knew what it was. I am now 68. I was then young and strong, but became sick and with many diagnoses. What followed was a series of nightmares until finally I was in a psychiatric hospital where the psychiatrist told me I wasn’t the cause of my own paid, but had fibromyalgia. She placed me on a medication no longer available, and in higher than usual doses. Within three weeks I was running and doing much more than even when I’d been healthy. Now, I work lying down part of the time and judge myself for not being in better shape. But still, with pain meds (including narcotics) can be active part of the time and take care of two horses and garden and write books, give lectures, teach part time. Without pain meds I wouldn’t be able to do it. And I have to fight for the meds. Thank you, and I am sorry you have had to go through any pain at all. I hope that your life improves!!!
    And yes, I hate to ask for help, too.

  3. Marta608 says:

    The same can be said about CFS as well. Ev-ery word applies to both, even though we may not have been diagnosed with both.

    1. jeancravens says:

      My daughter was diagonzed with fibro in 2014 and this artle has taught me a lot.I especially like #4.It fits her.

    2. bettyg says:

      you did a great job of writing the above from the heart; well done!

      too tired to write more at 230 am….

      bettyg, iowa activist, many health categories…

      borrelia/lyme disease.
      lewy body dementia,
      all cancers,
      heart, and list goes on!

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