Tag: cfs

“Hidden” illnesses like Fibromyalgia are real, and those who suffer from them are working harder than you might think just to be “normal.”

If someone has fibromyalgia or another chronic fatigue condition, they are probably trying a lot harder than it looks. I try not to fence myself in with limitations, but sometimes doing what everyone else takes for granted requires a tremendous amount of strength. They are not holding back. They are not lazy. They still love you even if they can’t keep up with you.

This might sound obvious, but as someone with an “invisible” illness like Fibro, I’ve often been called crazy, unmotivated, or lazy. I, in fact, have matured with two invisible conditions: Fibromyalgia/Chronic Fatigue and being transgender. It often felt like I was living a lie because I had to conform to a society that was not built for me. But the reality is that any society that tells its children to not be themselves is a lying society.

I’ve made tremendous progress, and you can get over illnesses like Fibro, but you will likely have to be vigilant about roughly 20 different things in your day just to be “normal.” I’m surprising myself these days with my normalness. It feels great. But I’ve still had to deal with people not understanding me and giving me shit for not meeting their expectations. I guess I know now that those people are not right for me, and I have to find people who do understand what’s going on inside of me. Some people will never get it. They won’t see the 20 things you do every day that they don’t have to do. Or they’ll tell you that “everyone has problems,” and focus on what you can’t give them rather than what you do give them.

Live and learn I suppose. These conditions have made me an alien, a stranger in my own land. But honestly, I’m pretty glad about that reality because I do not want to be an average sleep-walking American. Getting through the alienation and struggle has made me a better person. It has been a steep climb, but now I know it was what I was born to do. There is something else invisible in everyone: a deep well of strength that can carry you forward through anything as long as you persist. And persist I shall.

My struggle as a beat up and sick trans woman with few answers in America. I just want to learn something better

I carry so much weight. I pay child support for two children I haven’t seen in six years. It takes up half of my meager salary. I have PTSD from years of alienation. I have social anxiety and sensitivity to noises that can be debilitating. I am transgender, and, well, I have to be a woman in America. I have debt. I have fibromyalgia and fatigue that stab me all day long with weird pains in my neck and back. I have pain in my heart so deep that I lock it up so no one can see it because I’m terrified that if I show my hurt and vulnerability I won’t be able to just keep crawling forward. I’m terrified that if I open my heart, I will fall apart. If I feel, I will fall and never get up. I can’t do this on my own, and I can’t just dump it on other people too. I don’t know how to manage my life. I stagger around in life in a repeating cycle of trying to be this strong woman so this system will give me scraps. I use drugs, alcohol, and medications to propel myself forward in a stupor, carefully managing a cadre of pills upon pills that works for a while and then ultimately ends in total defeat.

I’m afraid to share. Inside I hate my vulnerability. It is the enemy. I hate it in others too because of this. I go to war against myself, and scream at myself inside to get it together or else. I tried killing myself, and death terrified me even more than living. I want to succeed. I want to live. I want to be open. But I don’t know how. My muscles and soul is tired. How do you live when you’ve been whipped and are still whipped daily? I alternate between hating that system and realizing that I’m just internalizing the system’s poison by doing so. The balance is so tight.

I know I’ve done good things with my life, but I’m tired. I’m most likely going to go back into residential treatment because I just don’t know how I’m going to manage my life. If I get a new job am I going to be able to do that without slowly collapsing from the weight? I know I have to succeed and survive. But I’m terrified of being fooled by my brain into more toxic behavior patterns. Depression upon anxiety upon pain upon manipulation upon fear upon doubt upon loss.

I made the decision seven years ago to be more honest with my gender, and that helped, but I’m very poor at certain things. I’ll last for a while and then explode. It was exactly two years ago that I decided to go into residential treatment the last time, and here I am again. Oh well, if that’s what I have to do, then that’s what I have to do. I’m not really super good at sharing my feelings. I’m good at talking, and I usually just talk over my feelings. But insightful people see through that.

I have fear and pain so deep that I’m locked up. So I just leech off of loved ones until they grow resentful. I have to escape this cycle, but right now I don’t know how I can do it. Right now, all I know is that I’m hurting people around me and hurting myself. Addiction is a scourge. I don’t even want to admit I’m an addict because I fear that everyone will run away screaming. How do I do this? I suppose just by getting through today.

What I’ve Learned from Living with Chronic Illness

Antibiotics are chemotherapy. The word antibiotic means anti life. I have to take some antibiotics right now, and the side-effects are really heavy. I’m feeling very low and drained. But I think it’s the right decision, because I have prostatitis which is related to my fibromyalgia/chronic fatigue immune dysfunction syndrome (CFIDS). I usually just kind of live with it and focus on the positive to not lose my personal power, but right now, the bombs have to be dropped to see if it helps. It sucks, but I’ll get through it.

Honestly, I’ve been thinking pretty heavily about my chronic illness. When I first got sick in my early twenties, I got a lot of resistance from the medical establishment and loved ones. I learned to sort of put it in my private life and not really share it. It’s a very difficult psychological balance to live in a fast world with a “hidden” disability. Our medical tests at present are very poor with detecting what’s going on in lots of chronically ill people, so often the medical establishment just defaults to the “it’s all in your head, take an anti-depressant, and deal with it” approach.

I deal with a ton of symptoms including: cognitive impairment, confusion, deep muscle and joint pain, intense fatigue, depression, anxiety, sensitivity, insomnia, and others. They seem to follow a very irregular pattern and always pop up at the seemingly worst time. It’s something I’ve had to shoulder silently for decades now, and I did reach a point two years ago where I was completely overwhelmed with my health and various other difficulties. But I reached my bottom, and I gave up. I acknowledged my powerlessness, and said “OK, I don’t have control of this situation, but I’m going to keep climbing no matter what. I’m listening and open to learning.”

Dealing with chronic health issues is a very complicated thing because often the best drug is optimism. When you have a poor self-image, a victim mentality, and a “the world is all against me” thought process, it can make you sick. I honestly believe, and the data backs this up, that a lot of my chronic health issues are due to a childhood of trauma and disempowerment. That’s not to say that there are not real, material things at work in my body, but the two factors go together.

My diseases and queerness and losing my children and everything else really broke me, and now I’m happier or more at peace. I don’t care about small things. I’m human, and they bother me, but I soldier on with an understanding that life is pain. I feel disabled in some way, and I have to do a complex set of daily adaptations to handle my various disablements, but that’s ok.

So, I’ve decided that my five year plan is to go back to school to get a Masters in Counseling in some capacity with a focus on the Psychology of Chronic Illness and start working in that field. I think I can help others find balance in a very confusing and overwhelming circumstance, and I feel a real calling to do so. Ultimately, I want to work outside of the medical establishment and integrate my alternative beliefs like the power of ritual and empathic therapy into my practice. But I need the paper to be a “real therapist.” 

There are often not any easy solutions in situations like mine. There is just work and balance. Maybe providence will smile on me, but it’s ok if it doesn’t. I know what it’s like to feel crucified here on Earth, and there is transcendence in letting go and accepting our limitations. There is a tarot card that keeps popping up for me lately: The Hanged Man. In most decks it shows a man hanging upside down, completely suspended and powerless. He has lost all of his earthly power, but in so doing, he sees the world upside down, and he has total spiritual clarity. Life picks us up and turns our lives upside down, and although I’ve seen great loss, pain, and trauma, I’ve grown to see divinity and feel a joy that never dies, even in extreme darkness.