“But you look well”, “you’ve always eaten really well”, “you seemed to have a heap of energy at _____” make CFS a difficult thing to explain. This is often because you only ever see me on a day i’ve managed to venture out of the house. Made up. On one of the ‘good days’, or ‘good mornings’ before i’m back in bed a few hours later. Or, you may have caught me when i’ve artificially lifted myself by using coffee or alcohol so that I could make that important social event, or just feel like my old self for a few hours. But you didn’t witness the week/s of struggle that followed after pushing myself more than I should have….
Its been called “one of the least socially accepted diseases”, and given the least amount of funding ($US5.60 per person compared with $2,999 for HIV/AIDS to be precise). Why? Because its not life threatening?
The physical illness may not be life threatening in itself, but it sure is life altering to all those in its path. Chronic fatigue, insomnia, brain fog, aching muscles and joints, and a general loss of vitality don’t equate to a life well lived.
And it deeply affects not just the afflicted, but all those close to them. The poor quality of life, coupled with hopelessness for relief, loss of employment/relationships/finances, chronic pain, and resulting depression, mean that those with CFS are actually 7 times more likely to commit suicide than the general population.
I believe much of this struggle is due to living with the stigma of having a disease that is as much a mystery to the medical fraternity as it is to the patient.
Just a few years ago in Denmark a girl was ripped from her parents by armed police and isolated for over a year in a psychiatric unit because the government deemed CFS a psychiatric illness that they believed her parents were enabling.
It’s been more than once that someone has suggested to me (in a round about way) that my condition may be due to X,Y and Z, of which all were psychiatric in nature. And whilst I wholeheartedly believe in the power of the mind to heal, there is no denying the physiological nature of CFS.
What those who have only known me post 2008 don’t get, is that I have NEVER in all of my life, been a girl who adores sleeping in, watching TV for hours, or simply being still. I’ve always been a doer. And from a young age I’ve recognised that I feel my best when i’m active. So ‘lazy’ is not my MO. PS I also had my sights on Qualifying for the Olympics in the Marathon when my CFS began, after a viral infection.
Please know that I do not write this blog requesting sympathy. Pity and I are not friends, and I do not find her helpful. But I feel I need to write this for the 20,000 other CFS sufferers in NZ, and millions globally, so that they can at least be understood. We don’t want a label. We are far more than someone with CFS. But we desperately want to know how to get better so that we can fully live our lives. So what I would very much love, is that more research, education and awareness is put towards this very complicated disease, and that all those close to someone with CFS have a greater understanding. Not just for us, but also for their own piece of mind. Because, holy crap, this is not fun for them either. I have a huge amount of love and respect for what my husband, family and friends have had to endure of late because of me…
I do feel very grateful that I have had many ‘fairly good’ patches in the last 10 years, where my brain has at least functioned at 70% and I have managed to hold down a part-time job and some days run 6-8km (the best days). But this again, makes my condition confusing to others.
I also feel blessed that I have, and never will, give up hope of recovering my health fully. I am constantly studying and meeting amazing people who have overcome, and i have learnt sooo sooo much about myself and holistic health through this process. So for this I am also incredibly grateful. I truly believe that the 6 mth ‘gut rebuiliding’ program I am currently undertaking through @kulturedwellness is going to be a massive turning point for me. Hippocrates was a very smart man…
I’ve invested tens of thousands of dollars so far on this journey, which I am fine with. Health and family above all else always. But many in my position do not have that option, and should not have to continue to go though this ‘trial and error’ approach. Many also don’t have a science degree to be able to critically assess the latest scientific literature, so are literally reliant on a medical system that provides no training on the subject to their graduates.
So firstly, thank you so much for taking the time to read this blog. And secondly, please, if you know someone with CFS, take the time to talk to them, ask questions, and listen with an open heart. What they are feeling is real.
Much love to you all, and here’s to an incredibly healthy and happy 2019! xx