So I haven’t found self-isolation too hard, stressful or different from my normal life. Why? Because my life changed when I was officially diagnosed with Myalgic Encephalomyelitis or Chronic Fatigue Syndrome in 2013.
Although this illness is INVISIBLE we are not.
I originally shared this piece on Medium. You can follow my profile here.
Chronic Fatigue Syndrome is an extremely misunderstood invisible chronic illness, which has led to many doctors to denying the disease and patients. May is home to Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome (CFS/ME) Awareness Day — I want to share my battle in the hopes to shed more light on this stigmatised condition.
A mislabeled illness?
I was officially diagnosed with Chronic Fatigue Syndrome in 2013, when I was 15 years old. The profound fatigue started almost overnight. The kind of fatigue that no matter how much rest you get, you never feel refreshed. Unlike many, my fatigue did not start after a virus like the Epstein–Barr virus. All my blood test results were normal. No life threatening reason was found to account for this change in events, therefore doctors stopped investigating my condition further.
Although my Chronic Fatigue Syndrome was somewhat misdiagnosed, as I later found out I had other chronic illnesses which were going untreated and undetected. I think part of the reason doctors didn’t explore my symptoms further was due to the ‘chronic fatigue’ label. This diagnosis felt like a label which wrote me off to many doctors as a lazy, over-worked and stressed high school girl simply dealing with the pressures of adolescence. I was assured by condescending doctors that my fatigue would get better when I left the pressures of high school. But I eventually became bed bound at 18 — a year after I finished school.
Chronic fatigue as a punchline
Chronic Fatigue Syndrome is no joke, it is a seriously debilitating disease that has been laughed about by many because of the lack of awareness as well as it’s name. Ricky Gervais made it a punchline in one of his shows claiming Chronic Fatigue Syndrome was the medical term for “I don’t feel like going to work today.”
But sufferers do not have a choice or complete control over their own bodies. I have encountered many doctors who are not up to date with research telling me “it’s all in your head”.
When I finally received my diagnosis, I was almost hesitant to tell others because I would often encounter people saying “oh, so you’re just tired all the time?” But the tiredness of Chronic Fatigue Syndrome doesn’t even begin to compare to ‘feeling tired’. It is not something that is fixed by having a few coffees or taking a Berocca. There is a difference between being tired from a busy day or stressful life and being so fatigued I needed assistance to walk to the bathroom.
What is ME/CFS?
Myalgic encephalomyelitis or as it more commonly known Chronic Fatigue Syndrome is difficult to diagnose yet it is estimated to impact at least 15–30 million people worldwide. The main characterising symptom of the disease is “post-exertional malaise [PEM], a reduction in functioning and a severe worsening of symptoms after even minimal physical or cognitive exertion.” Diagnosis usually happens when the fatigue has persisted over 6 months.
Feeling tired and being chronically exhausted are two different things. The best way I can describe my fight with Chronic Fatigue Syndrome is that it is similar to severe jet-lag. The type of jet-lag you get coming back from a long overseas trip. It’s that feeling when you sleep so much but you do not feel any better. The type of tiredness that leaves you confused and your brain fogged.
But in saying this, like most diseases, people can experience them on a spectrum: mild, moderate or severe. Throughout the last 7 years with the illness I have experienced levels of all three. Approximately, one quarter of chronic fatigue suffers become bed or house bound at some point with their illness.
Like me, some patients with Chronic Fatigue Syndrome are lucky to find the potential cause of their invasive fatigue. Meaning they find out they suffer from another health condition masquerading as Chronic Fatigue Syndrome and this fatigue is a side effect of their other illness. But many patients do not find a root cause. Studies have suggested key differences between Chronic Fatigue Syndrome patients cell function compared to average healthy individuals. Research indicates Chronic Fatigue patient’s cells may no longer function properly. Although it is a recognised illness, the number of doctors who still do not believe in it or trained in it is frightening. And the number of co-workers, family members, teachers or friends who assumed I was avoiding work has been unbearable.
This illness is invisible but it’s sufferers are not. Awareness is needed and research is required so the medical gas-lighting and stigma of Chronic Fatigue Syndrome can come to an end.
28 COMMENTS
Cassie Creley | Starlight Through The Storm
3 years agoYou raise such great points about the misunderstanding around ME/CFS, as well as how even medical professionals can perceive the diagnosis. I have this condition as well. The fact that doctors considered your being so ill as a high schooler as “normal” is so troubling. Thank you for sharing your story and facts about this condition to raise awareness!
sadminray
3 years ago AUTHORThank you so much for your lovely comment! There can be so many issues around CFS it is truly such a shame. I hope you are having a lovely day today!
Chronic Mom
3 years agoThank so so much for talking about this! So many people do not get the difference and this is a great explanation.
sadminray
3 years ago AUTHORThere can be some confusion around it hey? I think we’ve got to talk about it as much as we can! Sending love to you!
Mica
3 years agoIt’s such a tough condition to deal with – I am glad you are able to share and bring awareness to you, it’s so sad you didn’t get support from the doctors at first!
Hope you are having a lovely weekend 🙂 I went shopping with my sister yesterday, it was a lot of fun and nice to get out to the stores again 🙂
sadminray
3 years ago AUTHORThank you for your kind words Mica. I hope you are going well xx
Kara
3 years agoIt is wonderful that you are spreading awareness about this! It’s sad that people, especially doctors, just write it off as “being lazy”. Thank you for sharing your journey with it, and I always learn so much from your posts.
Susie
3 years ago AUTHORThank you so much for your support Kara <3 means a lot!
Allie Mackin
3 years agoI know how you feel. I was told by doctors that I may have this. I don’t. I mentioned before I have a multiple health issues so it mirrored CFS. But yep I too was told it was all in my head, until I had surgery to remove 4 pounds of adhesions which could be seen (though only through surgery) and was also diagnosed with PMDD which causes chronic hormonally induced insomnia and A typical AVNRT for which I had an eblation. But for years and years I was too was told it was all in my head. And if your female forget it, even female doctors treat you differently. I am glad you finally were diagnosed correctly. And I hope they find a cure and good way to manage it. I know it is real and not easy to live with.
Allie of
http://www.allienyc.com
Susie
3 years ago AUTHORI know you’ve had such a tough journey too, I hope that you are doing okay today! I hope they do too xx
Rena
3 years agoDear Susie, I’m so sorry about the diagnosises you got and I know you are really suffering. But I’m always impressed that you never give up and that you are so brave. Sending you love and all the best <3
xx from Bavaria/Germany, Rena
http://www.dressedwithsoul.com
Susie
3 years ago AUTHORAw thank you so much Rena! You are too kind xx
Amy Aed
3 years agoThis is such an important post! I have Crohn’s Disease so deal with chronic fatigue, and it’s so annoying when people don’t understand that it’s so much more than just ‘being tired.’ Thank you for this post, I really hope that more people read it and try to understand!
Susie
3 years ago AUTHOROh I am sorry you have dealt with this horrible feeling too! I hope that you are doing okay today x
Katerina
3 years agoThis is so interesting – I honestly don’t know much about chronic fatigue syndrome, so I am really glad you’ve shared this. Thank you and happy weekend!
Susie
3 years ago AUTHORThank you for taking the time to read it Katerina!
Radi
3 years agoI had no idea about this disease. This proves that we should never judge someone for feeling tired.
http://www.fashionradi.com
Susie
3 years ago AUTHORYes we should never judge others <3 I hope you are keeping safe and well Radi x
Naya
3 years agoAs always, this was such an interesting and eye opening read. Thanks for bringing this conversation to the table, Susie. Hope you are having a wonderful week xx
Naya
http://www.nayatilly.com
Susie
3 years ago AUTHORThank you for your kind words Naya xx
Tiziana Olbrich
3 years agoWow I had no idea! Thanks for sharing this important topic, I learned so much. I’m really sorry about your diagnisis!! I send you lots of love and good thoughts
have a wondeful day,
Tiziana
http://www.tizianaolbrich.de
Susie
3 years ago AUTHORThank you for stopping by to read it! Sending love back to you x
nerline
3 years agoI know exactly what you mean by chronic fatigue! Thanks for sharing this with us.
Susie
3 years ago AUTHORThanks for reading xx
amely rose
3 years agoThank you for this open and helpful post.
I was struggeling with beein tired and there are more things to keep in mind than just “not getting enough sleep” 🙂
Such a lovely post, thank you.
take a look at my BLOG and my INSTAGRAM
Susie
3 years ago AUTHORThank you for the support <3
Mercy
3 years agoEverything is clear to me now, you explained it in detail. I can’t believe there’s a condition like this, it’s good you write about this so there’ll be more awareness. Hopefully, people will get more educated and be sympathetic about it. I hope you are feeling better and can manage more. I think your blog is really a good platform for you to express your thoughts. Take care dear!
http://www.busyandfab.com
Susie
3 years ago AUTHORI’m glad it helped you understand the condition! Thank you for reading Mercy – I really appreciate your support x