Not so much an inspirational post, just some of my thoughts that I think you might relate to. Love and prayers to you!
Having chronic fatigue syndrome and fibromyalgia has been a very private journey for me. Of course, my family and close friends know of my illness, but for the most part a large portion of the people I know and interact with on a weekly basis have no idea. (Well, at least until I started this blog! ) I choose it to be this way. Writing this blog has been the most vulnerable I have been about it EVER. I really don’t mind opening up to complete strangers about my personal journey because I know that the majority of people reading this know exactly what I am talking about and totally understand! It’s comforting to know that there is a community of people who will accept my illness without any judgement. That’s part of the reason I started this blog. I know there are others like me, who suffer, but also have their faith to help sustain them through the hard times. I wanted a way to find those people and share in the journey together.
So, I often wonder why I feel so secretive about this fibro/cfs? I mean if I had cancer or multiple sclerosis or something like that, I don’t think I would have any trouble sharing that with people. So, I’ve taken the time to evaluate my feelings and here are my thoughts. I hope you can relate.
I don’t like being vulnerable. Who does really? I started my illness with doctors telling me that it was basically all in my head. That I had depression. That my symptoms were not real. Perhaps they were doing all that they knew to do, but they were wrong. Hearing that what you experience is perhaps a facet of your imagination is very hurtful. The symptoms are so real and can be very debilitating. How could I have made that up in my head? Little was known of fibromyalgia and cfs back in 1996 and although they’ve made huge strides in the medical community, there still seems to be a stigma among physicians about these syndromes. Terribly misunderstood. I still live in fear of the judgement, even today. It’s hurtful.
I have a wonderfully supportive family. I feel open enough to tell them anything and everything about my illness without any fear of judgement. Not that there is always understanding, but there is always compassion. I choose not to tell friends/acquaintances of my illness for many reasons, but a big one is still the fear of judgement. Perhaps, not to my face, but in their thoughts. It leaves me open to misunderstanding and hurt feelings. So, I have kept my journey private, I guess to protect myself. Anyone else live that way?
Another reason, is that this syndrome is so unpredictable. It changes daily, sometimes hourly, I find it hard to keep everyone updated. I mentioned this in one of my earliest blogs Compassion. I don’t expect other people, even those close to me, to be able to keep up with which symptoms pop up on which days. How often and how severe. I can hardly keep up the ever changing status of my illness, I certainly don’t expect other people to. And I don’t expect them to understand it either. I’ve mentioned this before, but if I am feeling bad enough that I can’t get off the couch then I let husband and kids know that and ask for some help during those times. If I were to dump the symptom list on them at any given time it might go something like this:
Well, my head feels heavy, the muscles in my neck feel like guitar strings, my shoulders are burning and feel like someone has beaten me with a club, my hips and glutes hurt so bad that sitting or lying down is very uncomfortable, but all I want to do is lie down, my joints ache like I have the flu, the fatigue is so bad that I feel like I need a blood transfusion, I can’t think straight, I’m nauseous and have no appetite, I feel like I might pass out, my arms tingle and are slightly numb, and I’m a little dizzy. Did you get all that? Because if you didn’t get it all, I am sure I will feel like this again tomorrow and could go over it all again.
Sound familiar? Don’t get me wrong, it is a wonderful thing to educate people and to communicate with loved ones. But in my case, after 16 years, it just gets old. I just want them to know that I don’t feel well today and hopefully that will change by tomorrow. Love me anyway and help me if you can.
A few people have found out about my illness from this blog or just through conversation and the most common response is, “ I had no idea.” Well, I guess I hide it well. The point is, if I am feeling bad, I stay home. You won’t see me. And if I am out and about and I feel bad, I usually will fake it until I can get home and in the bed. That’s just the way I prefer to roll. It is somewhat of a survival mechanism for me. Can anyone relate to this? or am I the only one who chooses this way of thinking? I am blessed that I don’t have to report to an employer everyday. I suppose I couldn’t keep much of a secret while attempting to work full time. I don’t even know how that would be possible. And I know some of you reading this are doing just that. Difficult.
Some people choose to make it their mission to create Fibromyalgia awareness. I get this and I don’t disagree with it, but I am not there yet. People need to be educated on these syndromes. To create awareness, if only to create more compassion and understanding. But all of that takes vulnerability and trust. Many of us, including myself, don’t have the energy for that kind of vulnerability. I applaud those who do. I feel like I am doing my part by writing to those of you who understand. Creating encouragement. And in that process, I am being vulnerable. That is a step for me. I am happy to share my journey with others who have it. To be vulnerable to help others be comforted and feel less lonely. This has been a mission of sorts. And it has helped tremendously in my understanding of the workings of these syndromes and my emotional response to it. No secrets here! 🙂 Thanks for coming along for the ride and listening to me!
Love and Blessings to all of you,
Let me know your thoughts about the secrecy part of fibro. Do you feel free to share your illness with the people in your life? or do you feel judged? Do you feel like it is your responsibility to help educate others about fibromyalgia or cfs? or do you just keep quiet, like me? I would love to know!