International Awareness Day – ME/CFS // Fibromyalgia // MCS – 12th May 2018
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The Need For Fibromyalgia Awareness
Today I’d like to do my own little tribute for the International Awareness Day for Fibromyalgia.
#Blog4May12th
Fibromyalgia has long been looked upon with scepticism, with many individuals and medical professionals doubting its existence. Some have regarded it as an umbrella term for lack of an officially recognised diagnosis, while others have intimated it to be psychological. Recent years have thankfully begun to shed light on this condition. Tireless campaigning has helped to raise awareness, increase understanding and has worked towards official recognition. But the fight isn’t over yet. There’s a long way to go to reduce stigma and improve both diagnosis and treatment for those dealing with fibromyalgia.
I was officially diagnosed with fibro by my rheumatologist last year after dealing with symptoms for years, initially thought of as being due to other conditions, that there was nothing wrong with me or perhaps that it was in my head (which they also said about my stomach issues, and here I am now, with a stoma!) For a while, I had asked to avoid labels and ‘umbrella terms’, mostly for fear it would signal the end of the road. I didn’t want them to stop looking for causes and the root of the problem, leaving me forever feeling worse and with no real way to get any better. I wanted them to keep looking, to figure out what was wrong, how my life has taken such a turn so quickly and left me like this for so long. The official diagnosis is to be reviewed in the near future due to overlapping symptoms between fibro & ME and the query over whether it’s both.
I’ve struggled with the concept of acceptance. I know the condition exists, that what I experience and struggle with are all very real, but accepting it is hard. Instead, I’m working on negotiating the terms of acceptance with myself. I’m keeping an open mind when it comes to further diagnosis and treatment and I’m accepting the way my body is now while trying to better manage the condition on a daily basis.
I still get frustrated, especially with the chronic exhaustion, pain and so-called ‘brain fog’. I still get disheartened and fed up with pain. I still feel a sense of loss, a weight of grief, and a huge deal of worry over the future.
I still get sick and tired of feeling so sick and tired.
Fibromyalgia Sufferers : You Are Not Alone
But I know I’m not alone. While I wouldn’t wish fibromyalgia on my worst enemy, there are sadly many people dealing with this condition. There are countless hurdles in diagnosis and perhaps more still in treatment and management. Then there are the social implications such as feeling like you’re not believed or that you’re being negatively judged. Then there are the small and large life ramifications with work, social life, relationships. The knock-on effects from the plethora of difficult symptoms is potentially huge and very misunderstood and underestimated by those who haven’t had their lives in some way touched by fibromyalgia.
Comments and media attention, for instance regarding Lady Gaga speaking out on her struggles with fibro, have brought he condition to the fore of social consciousness recently. It’s more important than ever to keep this momentum going, to keep pushing forward. To continue campaigning for change, for better understanding within the medical profession and society as a whole. For less stigma, less judgement, and more compassion for others and ourselves as warriors living with fibromyalgia.
Fibromyalgia, ME/CFS & MCS Awareness Days
This International Awareness Day also includes the following, with their respective colours :
Purple : Fibromyalgia (FM)
Blue : Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS)
Green : Multiple Chemical Sensitivity (MCS) / Lyme
You can also find out more on the May 12th Awareness day on Facebook.
What have been your biggest struggles with these conditions (fibro / ME / MCS) ? Have they been with diagnosis, treatment, social implications, emotional impact, work?
Here’s to hoping that more awareness, more compassion and greater understanding are grown and nurtured so that we can live the best lives we can regardless of the illness.
Caz ♥
You can find me on Facebook too so feel free to get in touch.
31 comments
You have made me aware of this. I looked it up online after I saw you talking about it. I didn’t even know Lady Gaga had it.
I’m so glad this post has made you aware of this – reaching out to those who haven’t heard of it or don’t know much about it is so important. Thank you for letting me know and for taking the time to read. Have a lovely weekend 🙂
xx
One of my blogging buddies suffers from this. I didn’t know much about it until I met her.
Have a fabulous day. ♥
Thanks for writing this. I received an f.m. diagnosis nearly six years ago, and you describe well what have been some of the most challenging aspects of it.
Thank you, Katherine. It’s hard to adequately capture all the challenges but I think it provides a generally gist, I’m just sorry you’ve had years of experience with it, too. Thank you for the comment ♥
Great post. Sorry to read about your struggles with fibromyalgia. I’ve had ME for 5 years this month, and I’ve struggled with all of the things you mention – diagnosis, treatment, social/emotional implications and having to give up work. I think one of the hardest aspects of these invisible illnesses is that others don’t know just how much we are suffering. Here’s to hoping for more awareness and better treatments going forward xx
I’m sorry you’ve experienced so many of the things I mentioned. I agree with one of the hardest parts being how others don’t know how much you struggle, and too often we can feel like frauds because we might “look fine” on the outside. Thank you so much for sharing, Emma, your comment is much appreciated! xx
Fibro is a tough one. Autoimmune stuff is particularly hard I think – it’s still not well-understood, even by doctors.
You’re right, understanding of immune conditions in general seems to be lacking and with so many overlapping symptoms and conditions, and the invisible aspect, it’s all the more challenging. Thanks for the comment, Jay! x
Great post!
I’m sorry to hear about your struggles with fibro.
My mum was diagnosed with fibro about 6 years ago, and struggles with chronic pain everyday, which has affected many aspects of her life. She was lucky enough to find a doctor who was aware of the illness and managed to get a quick diagnosis – which I know is quite rare, as not many people really understand it, or have even heard of it.
I hope through making people aware of the illness, more research can be done to provide better treatments and a better understanding of what it is.
xx
I’m so sorry you’re mum has had such struggles with fibro too, though as you say it’s one blessing she has a doctor who is willing to listen and help. Does she manage the condition okay at the moment, or is there anything in particular she finds especially challenging (ie. pain management, medication, sleep etc)? I’m glad she has you in her corner and with any luck in time there will be greater understanding and better support available. Thank you so much for sharing ♥
Caz xx
Hi Caz,
thank you for this honest post. I did not know about that at all It’s really the first step in life to accept things, and this is really important for change. I am sure that you will be ok and I wish you the best . Stay strong Caz
Thank you so much for the wonderful, compassionate comment, Ben – I hope you’re doing okay and that you have a lovely weekend ahead 🙂
xx
Thank you for sharing your experiences, Caz. You are helping so many people with this blog! xo
Thank you, Christy – that’s very kind of you to say, and I really appreciate your support & comments! 🙂
Great post fellow fibromyalgia fighter, for raising awareness and the importance of striving for understanding and help along the way…
Thank you – together we can make a difference! ????
Thanks for sharing your experience with such openness – I can completely relate to your ambivalence about the fibro/me diagnosis. I really like how you phrased acceptance as a negotiation with yourself. That really captures my feelings as well! Best xx
I’m glad you can relate to the ambivalence issue, I wasn’t sure whether I was making much sense when I wrote it! Thank you so much for the wonderful comment, Katarina ♥
For me it took 7 years to diagnose and I also got a possible RA diagnosis. However I had a positive lung and blood results suggesting Lupus. Thankfully my symptoms are much better 15 years on…
It’s so hard with overlapping symptoms and tests that aren’t necessarily definitive, so I’m sorry you’ve had to experience all that uncertainty, too. I’m glad to hear that symptoms have improved over the years though. Thank you for sharing and the great comment, Brigid! ????
Thank you for sharing your own experiences and pushing for a raise of awareness. <3 I think that's so important. Awareness is the first step in empathy/understanding, so I'm always for learning more about what others are going through and living with on a daily basis. Wonderful (and important) post! 🙂
You’re right, awareness is so important and I think that it’s a case of ‘every little helps’; over time, each bit will hopefully add up. Thank you for your fab comment! 🙂
xx
I love your post regarding Fibromyalgia. I’m sorry you have to suffer from it.
I was first diagnosed with Fibromyalgia in 1992, at the age of 23. By 2004 I had 9 different doctors who had diagnosed me with it being the root cause of whatever issue I was seeing them in their areas of specialty.
I, too, struggle with taking it serious or identifying with it because of the “lazy person’s disease attitude” associated with it.
When I read your struggle, as strong as I read you in your posts, I am taken by surprise at how much power it can still have to cast false guilt and shame on the strongest of fighters. Please know I am praying for you, and for everyone still waiting for answers, healing, recognition, or at least the freedom from being written off with labels.
Thanks for sharing this post! Me and God love you!
Sounds like you’ve had a lot of years and a lot of struggles – you really are one tough cookie, Gail. You’re right, it is seen as a “lazy person’s disease” by some and I think a lot of it comes down to a. lack of scientific ‘proof’ (like a blood test reading to specify an exact problem) and b. lack of understanding in society in general. Thank you so much for sharing and your wonderful comment – Sending my love back to you, I really do appreciate all of your support personally and with my blog. xx
Thanks for sharing this, I’m not a sufferer myself but know people who are and without stating the obvious, promoting awareness is a huge thing. Also didn’t know about Lady Gaga.
You’re right – it can seem obvious yet it’s so important in raising awareness, promoting more understanding and compassion around things like fibro. Yes, I read about Lady Gaga a few weeks ago and it comes as quite a surprise to a lot of people because of how well she does with getting out and about and all she does, to struggle from such a condition. Just goes to show how we can all put on a brave face sometimes, but looks can be deceiving.. Thanks for the comment – hope you have a good week ahead!! 🙂
Lady Gaga and Morgan Freeman! I read this post after I left a comment on your other post about me having this mess. Sorry that you too suffer with this along with your other stuff.
I had no idea about Morgan Freeman, I just had to Google that. Wow. It’s a tricky one because on the one hand I like that ‘celebrities’ can raise awareness & bring these conditions out into public knowledge more and it can help push for change, better diagnosis, treatment etc, but on the other hand I/we can often compare ourselves and feel as though we are less capable and achieve less than these famous faces because it can be a struggle doing the most basic of things on a daily basis. Thank you for sharing 🙂
x
I was diagnosed with Fibromyalgia last year, I honestly knew very little about it, even though I’d spent plenty of time in Rheumatology with Bridget.
At first, I thought I was going mad because one day it was hurting/aching/pins n needles there and the next it was somewhere else. The diagnosis explained why.
I also became “shattered”, not tired just absolutely “shattered”. Around the same time, I was diagnosed with heart failure, then a few months after that kidney cancer. The problem was, I didn’t know which one was making me so “whacked” possibly a combination of all of them.
Cancer has gone now, along with the kidney, so I can narrow the extreme fatigue down to Fibro or Heart Failure or both. Either way, even though I was unaware of Fibromyalgia awareness day, I am glad there is an effort going into recognising what is a horrible, debilitating, frustrating and grossly misunderstood illness.
Thank you for sharing.
You have been through a hell of a lot, I’m so sorry. But I am really glad they caught the heart failure and cancer, and that the latter has now gone. How is the heart failure being treated..? Utterly “shattered” is how I’d describe how I often feel, too, it’s beyond tired and it’s not ‘sleep tired’, it’s just exhausted to your bones. Thank you so much for reading and sharing a little of your story. I wish you all the very, very best ♥