When you get a diagnosis of Chronic Fatigue Syndrome, the only option you have to get better is to Create your Functional Self. As I tell many people, there is no magic pill to make you better. The research is so new on CFS that there is still so much that we don't know about it. That's why treatment is not as simple as taking medication. As part of your treatment, you may need certain pills to treat symptoms, but your main treatment is a lifestyle one.
As I said in the description of my blog, I hope to create a space that helps people to understand CFS. I think we also need to generate more awareness about this illness. More and more people are being diagnosed with it and cousin syndromes like Fibromyalgia. Yet, these are what we call "invisible illnesses": a person who has CFS can look completely normal on the outside. No one can see the symptoms that we get on a daily basis and that become an obstacle to our functioning normally in society. Because there is nothing outward that people can see, unlike say a broken arm, CFS patients unfortunately often meet with either ignorance or disbelief. I have been told all kinds of things by all kinds of people: "you're just not fit", "you're lazy", "if you exercised more, you would have energy", "you're depressed", "it's all in your head", etc. Let me assure you that none of the above is true for someone with CFS. If someone came to you and explained that they had cancer, you would never have said any of those things. Cancer is an invisible illness in many ways. No one can see your cancer. At the same time, no one doubts that you have it. Everyone understands what it is and what the consequences are. That is what awareness can do for society; we acknowledge and understand cancer. I hope one day it will be the same for CFS, that when someone says, "I have Chronic Fatigue Syndrome", the other person will have understanding of what that means, even if they can't see the symptoms.
For someone with CFS, the treatment process is slow and oftentimes imperfect. From the diagnosis point, which is usually your worst or sickest point, you have to rebuild your energy and your life one step at a time. For most, it is a constant search for balance. Everyone, I think, can relate to wanting to have more balance in their life. However, for most people, having a lack of balance does not lead to a complete inability to function. That is how crucial it is for someone with CFS to maintain balance; it is the difference between being able to function, being able to produce, being able to have some quality of life, and simply not being able. About a third of patients stay as they are at their diagnosis point. Another third, the group that I'm in, regains some functionality (to different degrees), but is never quite like they were before they got sick. The last third makes complete recovery and goes on to be just the way they were before. What every CFS patient realizes is that there is a certain amount of the illness that they can't control, but that there is also a certain amount they can. Your best shot at exerting some control over it and having a better quality of life is by Creating your Functional Self. You are much more likely to be in the groups that regain partial or total functionality by sticking with the lifestyle treatments (the most effective by far, even according to the latest studies), by seeking that balance every day. Following your treatment, which is all self-treatment, is how you take something like CFS, gain a sense empowerment and Create your Functional Self.
I will explain more about CFS, treatment and many other topics as I continue blogging. I would just like to clarify right now that you cannot "think yourself" out of the illness. It is rare for people to be in the last third, where they recover fully. Most of the time, if you talk to a CFS patient, the word "chronic" definitely applies. I have done most everything right for my treatment, but I am not like I was. That is not because I was not sufficiently motivated or that I want to be sick. Again, that is not the correct way of seeing this illness, but rather trying to make it into something psychological, which it is certainly not (more on this in an upcoming post). The psychological outlook is something that advances treatment, not something that causes the illness. Moving forward in my blog, I hope that anyone with CFS reading this might find something helpful in my story or in the habits I've developed to maintain my balance and create functionality. I am sure that these reflections will be helpful to me, because one thing I've learned that helps in your treatment, is cataloguing your progress. It is important to view your progression over time one the macroscale (weeks-months-years) rather than the microscale (the day-to-day grind). Reflecting and cataloguing helps you to see what works for you and what doesn't. So this is a tool that will help me in my progress and my treatment, that will help me to Create my Functional Self. In turn, I invite any readers to share their insights and tips to progress with CFS.
Wishing all my readers out there enlightenment and growth. And whether or not you have a chronic illness, go out there and Create your Functional Self!
~ Elise
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