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Posted by & filed under blog, Emotional Support.

Disclaimer: When I started this nonprofit, I vowed to be open and honest to myself and to others via this site about the struggles CFIDS puts on a patient’s life-emotionally, physically & beyond. This will be one of the first posts I write that requires a deep look inside myself to find the courage to write it. *

I watched a sad (also known as romantic) movie tonight called “The Vow.” I usually avoid these movies as they draw out emotions, and once that door is open the tears never seem to stop. As long as I avoid emotional conversations, sad movies, and push my thoughts & fears to the back of my mind I can usually operate pretty well on a day to day basis-emotionally speaking that it is. Tonight’s movie left me in tears, not because of the story but because it left me wondering “Will I ever have that?” Which made me start thinking even deeper about why I couldn’t stop crying this evening. I came to a very good question… I believe that a lot of us afflicted with this illness wonder:

Do I cry because I’m sad I lost the person I thought I was, the things that make me “Me”, or are the tears for the fear that I will never have that part of “Me” back? 

While all of us face different situations: some married, some with families, some with support systems, some without, some social, some not, some bedridden, some active… we all face a common emotional symptom “The Loss Of Self.” 

I used to be such a loving person. Someone that loved to be close to a partner, touch them, hug them, comfort them. I gave selfishly my heart to someone I loved incredibly deeply. I felt lucky to be able to feel a love like that, as a lot of people never do. I was compassionate and passionate all in the same moment. I used to feel something called love. I cried tonight for having lost that.

I also cried in fear of never having that part of myself back again. Not because I am heart broken or not over a love (which I am by the way, but because I genuinely feel incapable of being close to another person… even just for hugs! It’s a feeling only someone in our position can understand. This feeling has nothing to do with being sad, depressed, figuring one’s self out or any other justification a “healthy person” may give for this feeling. This is a legitimate feeling of disconnection not only from your own body but from your ability to produce any emotions from the sick body you are living in.

Book after book continues to say “Be sure to seek touch…your body needs it.” OK, I get it, human touch is important. I guess I didn’t realize how much of a factor it is until now. Living in a body that doesn’t feel like “You” not only makes you feel differently about it emotionally, it forces you into a shell. A place where even uncrossing your arms or hugging someone is uncomfortable! This was never me before. I used to be affectionate! I’m starting to learn to accept the “sick” part of my life so I am happy for that process to be underway. I guess the thing that no support books or chat forums have addressed is: How Do You Deal With The Possibility You May Never Get It Back? 

I know I am younger than most dealing with multiple re-occurrences of CFIDS (30 years old) so this is really the first time CFIDS has hit me hard in my adult life when I am working towards different things in my life that may include a marriage, a family, living beyond happy hour to happy hour as you do in the early twenties (which I commonly did). So at my age, is it plausible to believe that with the consistent onset of CFIDS and years of battling that I may just be too exhausted to ever find that softer and emotional side of myself again? Is the way I’ve chosen to handle this onset wrong; pushing emotions to the back so I can operate everyday under a somewhat “normal” capacity from an outsiders viewpoint? I can’t even have conversations with my mom anymore about my health without using anger or curtness to cover the hurt & anger I really feel inside about being “sick.” This fear of not having emotional capacity to love does not refer only to a partner, it refers to ALL aspects of my life; family, friends, old passions, old hobbies, a general love for anything! Will I feel a sparkle of that again? 

If you were answering these questions for someone with a broken heart or someone that is depressed, we would all know that the answer would 99% of the time be “Of course you will feel those things again. Just give it time and you will get back to yourself again.” The hard part with this is no one can even guarantee me I will be able to get out of bed tomorrow, or feel like putting a huge effort in to get to the gym to do daily walking, or the ability to make a business meeting… let alone start to heal emotionally. So if no one can guarantee me that… it leaves me to think on behalf of all patients:

How can you start to heal your heart, your happy side, your passions and your sense of self when your body remains so sick? 


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One Response to “Tears: The Sadness of Losing “It” Or The Fear of Never Getting “It” Back”

  1. sumkid

    I was 17 or 18 when I first got sick, either my junior or senior year in high school. I’m 28 now. Looking back on the few memories I have of that time, I can see how the symptoms of CFIDS sneaked their way into my life. It began with not being able to process information that I was learning. Just a little bit. That graduated to being fatigued after school was done for the day. And then that moved on to more severity where paying attention in class and understanding material and assignments became ridiculously difficult when they shouldn’t have been, when they were so easy to do before.
    After the long haul of high school – I did graduate – college was an endeavor. I had to drop out after one measly term and deal with being chronically ill with many afflictions riding on the back of CFIDS for five years before attempting to go back to classes. And when I could it was super hard and exhausting. I made it through 2 years of classes to “graduate” with an AS in general studies… essentially getting nowhere. And I relapsed severely afterwards. Heck, I was relapsing in the midst of my last 2 terms.
    Home bound I find myself wondering what can I do with life? I swallowed the hard pill of accepting that my college and life goals are beyond my reach now. And I see others who are achieving similar goals and I find it hard to really congratulate them genuinely. I envy them. But even then that envy is weak. It’s exhausting to be envious.
    Being sick for 10 – 11 years, I wonder if I’ll ever find love and companionship that is different from family, not that I get much from them anyways. They’re distant, annoyed enough by me being sick that they don’t really want to be in my company and just talk. Heck, one member hates me with a vehement blood passion that is so dense that it could be figuratively cut into with a diamond edged saw.
    When new people ask about me the only thing I can immediately think of is how long I’ve been sick, what my sickness is and what it is like. I don’t remember me for me. I can’t easily bring up me beyond being sick. When someone asks how my day has been, i quite frequently forget to flip the question back to them and ask how their day has been. I don’t want to be reminded of what I could have been and what I could have had had I not gotten sick.
    People say that they “want someone to love me for me, for who I am.” Well, how can I achieve that when I don’t even know who ‘me’ is.
    Didn’t mean to rant. I just don’t know how to say what it is I think I want to say.


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