letting-go-of-fibroymalgia-guilt

Fibromyalgia brings with it a lot of guilt. We feel guilty that we are struggling. We feel guilty that we cannot always do certain things. And we feel guilty for asking for help from others.

Guilt is a horrible emotion. It can wear us down and greatly affect self-confidence and self-esteem. You may disagree but I believe guilt is mostly a product of setting ourselves standards that are exceedingly high; expectations that are sometimes unobtainable.

If we keep thinking that we should be able to do things or, equally, that we should not require help then guilt will slowly start to creep in.

One of the happiest moments in life is when you find the courage to let go of what you can’t change

When I was first signed off from work I felt a lot of guilt. I hated that I couldn’t work and I felt like I was letting everyone down, including myself. When you think about it, it’s a terribly unfair way to think.

I did not choose to have this health condition. I did not choose to stay off work.

It was a consequence of my circumstances that I had absolutely no say in what-so-ever. Fibromyalgia is not something I have control over. I can try as hard as I can to improve my situation but ultimately this illness can be unpredictable.

I had a moment after speaking to my mum a few weeks back. It was one of those lightbulb moments for me. It made me question, “why should I feel guilty over something out with my control?” I figured a lot of the guilt was stemming from the fact that I looked okay.

If I had a broken leg would I still feel that same level of guilt? It would probably be there to a degree. However, I doubt I would be feeling the same level of guilt because there would be an end date. I would know that after X amount of weeks my leg would be healed.

I wished that the same applied to chronic illness but it doesn’t. A broken leg is also universally understood. Chronic illness, sadly, is not.

So I changed my priorities. Work was no longer top of the list. Financial worry took a back seat. It took a lot to make me feel this way.

I can’t even pinpoint how I did this but I made the decision to let go of what I have no control over. Instead, I chose to invest my energy into what I could control.

Ultimately, I decided to put myself first for a change. More specifically, I needed to prioritize my health as, at the end of the day, there is nothing more important. The amazing thing about this decision was that guilt left me. I managed to let go of it.

We don’t get control over a lot of the things that happen to us in life but we have a choice about how we deal with them.

Part of the change was to focus on each day as it came. I have stopped thinking about the past. Thinking about whether I could have done anything differently to have stopped this massive flare was wasted energy, for example. I have stopped worrying about the future because it’s something I can’t predict.

Instead, I focus on the here and now. I try to live my life by making the best decisions for me that will hopefully help me to feel better. After all, this is something I have control over.

If I am fatigued, I rest. If I am hungry, I choose to eat foods that nourish my body. If I have the energy, I will go for a walk to strengthen my muscles.

The thinking is that basic. A product of this, though, has been a step closer to acceptance. I have taken the mindset of “what will be will be”.

Now I am human and therefore I am far from perfect. Acceptance is, of course, a journey and not a destination. I will still have those bad days where negative emotions creep in.

However, the bigger picture is much more positive and it is brighter, despite inevitable setbacks.

Is guilt a problem for you? Is there anything you can choose to let go of? Let me know in the comments below.


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Fibtromyalgia and guilt: When you have fibromyalgia, it's easy to suffer from guilt due to the things we are no longer able to do. I have learned that it's important to find a way to let go. Click to read or pin to save for later.

Author

Hello, I'm Donna. I was diagnosed with Fibromyalgia in 2013 and started this blog shortly after. After my health declined significantly the following year, I decided to become my own advocate and searched for answers. It took two years but, in 2016, I finally discovered I had Lyme Disease. On February Stars, I share my personal journey back to better health; discussing what has helped me and the mistakes I've made along the way. I also cover topics on self-improvement, managing symptoms and living life to the fullest with chronic illness.

30 Comments

  1. Pamela Arnold Reply

    Donna, I have newly discovered your blog and have to say I absolutely am inspired by your thoughts and words. I too have been diagnosed with Fibro and find everyday to be a struggle. I look forward to your posts and find your photos to be calming and beautiful. I live in the states in Ohio and have struggled to find support networks and updated information to help me manage my health. You have helped me greatly! Keep up the good work!!! Pam 🙂

    • Thank you so much for your kind words Pamela. I’m really glad my blog inspires you. I empathise with your struggle, this is for sure a physically and mentally tough illness. Take care x

    • Thank you for your kind comments and for sharing Karen. I’m glad you think so 🙂

  2. Diane Edwards Reply

    Thank you Donna for such a well written article on letting go of guilt… you have put into words exactly how so many of us with this condition feel every day. It is so difficult explaining to family and friends how it feels to live in our bodies when we look so normal on the outside… I have been learning how to “pace” myself since my diagnosis 10 years ago, and it is so true that it is a daily battle to keep my symptoms at bay. Like you explain so well, we feel guilty having to turn down so many invitations to do things… have you read the “Spoon Theory” ( http://www.butyoudontlooksick.com)? May I ask where the beautiful peaceful photo of the sea was taken? I also live in Scotland and there is so much stunning scenery, and I feel thankful that I can experience it. 🙂

    • Thank you Diane. It is really hard to explain it to friends and family and I think the spoon theory is one of the best examples out there for explaining things. Pacing is so difficult. It is only natural to want to do more on the days we feel better but this is counter-productive and can knock you into another flare. To be honest, I don’t know if I will every truly get the hang of pacing! The photo was taken on Ravenscraig beach. It’s looking out across the Firth of Forth. Scotland is such a beautiful country, I feel very lucky to live here. You may like my other blog I am writing in collaboration with my friend called Incredible Scotland- . Take care

  3. Guilty and frustration are emotions I struggle with. I wake up with a list of things I would truly like to do each day and then fibro pops up to go hahaha at all my plans. I look around at my apartment and feel guilt and shame over how dirty it is. Thank you for this post it reminds me my little emotional energy is better spent with self-love and self-compassion so I can find solutions to my problems.

    • Hi Rose. It can be so hard to do but I try not to focus on all the things I want to do or think I should be doing as it leads to negative emotions and self esteem. Like you say, our energy can be better spent and we deserve to treat ourselves more compassionately

    • greta hunt Reply

      I feel exactly the same way each day – I look at my flat think ‘I’m on the verge of being a tramp’. Doing stuff takes ten times longer than it should do and about a hundred times more effort! It’s a vicious cycle cos your environment effects your mood too and feeling down makes the pain harder to cope with. I found that my big achievement was to let go of the life I thought I was going to have – I was in my twenties when I first got fibro and it was so hard to get over that I wasn’t going to live the life I thought I was. I made new dreams and plans and started to see myself differently. I still struggle with guilt and the fact that I look able-bodied. But it gets easier to push those thought aside and just get on with things.

      • Hi Greta, I think I could learn a lot from you. I do know deep down that I won’t be able to live the life I envisioned for myself either. That’s not to say that my life won’t be enjoyable or fulfilling, but just that it won’t turn out how I thought it would. I need to find those new dreams and plans. It’s hard to come to terms with though isn’t it? I know what you mean about house work. I try my best to live minimally with little clutter so that at least it feels tidy. I am learning to let go of the feeling that everything needs to be immaculate. It’s not easy to change your expectations though.

  4. I so deal with this ALL the time still!!! I am trying, thanks for sharing your story!

    • Hi Jacqui, thank you. I think it is something we constantly have to work at and it is certainly not easy. I hope you are as well as possible

  5. Lovely positive post Donna, I think I am finally starting to let go of my guilt, and I am beginning to feel lighter for it. It’s really hard, society measures us by our ‘productivity’, and the realisation that actually, it’s OK to just be is a tough one to reach. But oh boy it’s worth it! ?

    • Thank you Denise. I’m so glad you are working past your guilt and feeling the benefits for it. That’s a huge achievement and like you say, it’s totally worth it 🙂

  6. Kim Lennie Reply

    I too got diagnosed with Fibro about 6 years ago and I empathize with everyone here. I experience all the same things and find it most frustrating to not be able to do the things I used to. But I try to keep a positive attitude go for walks everyday sometimes small sometimes large depending. I try to keep myself active in craft classes that I walk to. Kills 2 birds with 1 stone lol. I am famous for overdoing it when I do feel good and know I have to stop doing that cause for that 1 good day I end up with 3 bad days. Now that I have found your blog I hope that I may learn a thing or 2 in order to keep my perspective. Thank-you so much for your insight.

    • Hi Kim, it sounds like you have a really positive attitude and are doing all the right things for yourself. I completely understand the overdoing it on a good day. It took me a long time to realise I needed to work on that. Sometimes it is still a work in progress 🙂 I hope you find my blog helpful.

  7. I deal with guilt alot! Today is one of those days. I have spent most of it in bed ???? I’m working on it,,,

    • Hey Lisa, I think guilt is one of the most difficult emotions to work through. It’s hard to put our own needs first. Sometimes that means a day in bed so I hope you will be kind to yourself 🙂

  8. Guilt is definitely an issue. I think for me it stems from the fact that people don’t believe you, and you really need them to believe you. I even face it from family who doesn’t understand.

    It’s also really hard to have a limited life. I’m constantly frustrated. Despite the fact that it’s not in my control, I want it to be. I want to have control back over my life.

    Thank you for writing this!

    • It’s hard when people don’t understand or believe what you are saying so I really feel for you Crys. Especially when those people are family. I completely share in your frustration. It is a work-in-progress learning to accept and live within my limitations. I will feel like I have reached a good place and then the negative emotions resurface. I think it’s worth allowing them space. I find it’s a tricky balance between expressing my emotions and employing coping mechanisms that help me to move forward.

  9. Guilt is definitely an issue for me. My 22-year-old son lives with me, and is very supportive, but sometimes sighs or looks a little annoyed if I ask for help. Then I feel guilty for asking, and for not “being the mom” (my inner critic seems to think I should do everything for him, even though I really don’t believe in taking care of an adult even if he is my son). For me the guilt is compounded by having a seizure disorder, so I frequently can’t do the gentle exercise I “should” be doing to help with the fibro. I feel guilty for failing as a fibro warrior. I’ve been ill for more than fifteen years, but the fibro diagnosis is about a year old, and I’m still struggling to learn how to live a meaningful life as positively as possible. Thanks for your words here, and for letting me vent.

    • Hi, Rebecca. I find with my husband (who helps me with a lot of things) that they sighs aren’t directed at me but more because he doesn’t find the housework etc. that I have asked him to do all that enjoyable. We had a chat about it because I felt the same as you did. But when it came down to it, he likes to help me (and wants to) but it doesn’t mean he enjoys the tasks that he has to do, if that makes sense.

      I have also tried to remove should from my vocabulary when it comes to my chronic illness because it puts on a lot of pressure and expectation. You are certainly not failing! You are doing the best that you can with very complex health conditions. Learning to adapt to life with limitations is hard. It’s an on-going work in progress for me if I am completely honest 🙂 Sending gentle hugs your way. We are all in this together.

  10. Being current in my thoughts and emotions is a huge challenge for me…
    My mind often runs to the past,
    I used to be able to do this…
    I used to play sports…
    I used to be able to work more….
    And keep up with housework….
    And if I don’t stop this thinking, a thousand more guilt ridden thoughts fire through my brain.
    It is also true with the future,
    What if I can’t be a good grandmother to my future grandkids….
    What if my kids have to take care of me when I am older….
    What if my husbands health declines and I can’t care for him in the way he has always cared for me….
    And again if I don’t reign in this thinking it can take off into a huge storm of guilt!
    So being current, the here, the now, helps me with some of the guilt but 25 years with fibromyalgia and I still fall into terrible times of guilt which leads to depression…..and that is not a place I want to be! So I focus on who I am now, my strengths now, my assets to my friends and family that I can offer now….and I have a lot to give!

    • I can relate to all you write here. Our own minds can be our worst enemy at times. The what ifs can take over and it spirals. I totally agree that living in the here and now and taking things one day at a time is a helpful approach. I’ve had to totally change my
      perspective on things. You (and all of us) do have a lot to give 🙂

  11. This is a very important topic for us. I have been diagnosed with Fibromyalgia for 1 year now. Have had all the symptoms for approximately 3_4 years. This, I have to say, has been the hardest most challenging year I have ever had and Thank GOD everyday for all of you bloggers!

    I have pain day in and out even with pain medication. I do thank the Lord for the medication because I know as well as you know that the pain would overtake me.

    I am in the process of filing disability I have a lawyer that says I have a good case. I can’t help but worry sometimes and I am so scared I won’t win. What would I do? I am single and have always supported myself.Right now I have my family and a very dear friend who helps me financially so that I don’t work in pure agony. This brings to the topic of feeling guilty which in turn makes me depressed and anxious. These exact emotions have been playing havoc with my mind since this has started. I’m learning thru the blogs I’ve been reading we all have so much in common. I always worked in healthcare taking care of patients never realizing how sick I really was and pushed myself to get through the days.I almost collapsed I was in total denial that I was sick. Let’s all keep fighting the good fight of faith and pray for each other.we need each other! GOD Bless You All!

    • Hey, Judy. I am sorry to hear that you have been diagnosed with fibro but I guess it’s a positive that you now know what you are dealing with after all these years. Medication can play a really important role and I wish there were better options out there. But, like you say, taking the edge off and dulling the pain definitely helps to stop it from becoming all-consuming.

      I wish you all the best with your disability case. It sounds like you have good support around you and a knowledgeable lawyer. I truly hope you get the outcome you deserve. Guilt is a difficult emotion to work through. I think what helps it remembering that those around us are choosing to help. And, if it was the other way round, I think we would be doing the exact same for them. Learning to be kinder to ourselves is easier said than done though. I always ask myself, “would I be saying this to a friend?” If I wouldn’t then why am I saying it to myself? 🙂

      I can appreciate what you say about denial. I was in denial for a very long time and ended up very sick as a result. Denial still creeps in from time to time. I think acceptance is a constant work in progress.

  12. Hi Donna,I just read your post. Every word resonated with me, because it’s so true what we feel in regards to guilt. Thank you for writing about it, I feel like it will help me to let go of feeling guilty. Thank you again!

    • Hi Doris,

      Thank you for your comment. I’m glad to hear that this will help you to let go of guilt. Wishing you all the best 🙂

  13. Thank you so much for caring and taking the time to post the article. It really made me think and I am
    going to read it often until I change my way of the thinking and drop the quilt.
    Take Care.

    • You are welcome, Sharon. I am glad you have found it helpful and I hope you are able to drop the guilt you are carrying 🙂

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