“I’d rather have 30 minutes of something wonderful, than a lifetime of nothing special.”-“Steel Magnolias”
I am, sadly, still struggling with my health. I tried my best to have a good weekend, celebrating at my favorite Italian restaurant with some of my favourite people, and playing trivia with some of those same favourite people, plus others I always look forward to seeing. But, dizziness, light-sensitivity, a feeling of pressure on the top of my head, and feeling spaced out and hating the world cast a pall over everything.
I have so many good things in my life, but my body won’t let me enjoy them. I have opportunities I’m not always physically up to handling. Whatever is wrong with me has destroyed both my mind and body, and I’m not sure I will come back from this. People either tell me to pray or keep a positive mindset—which makes me irrationally angry, because I cannot believe that hope and smiles and rainbows and blind faith will cure what science cannot— or, they tolerate my incessant struggles with anxiety and depression, and I have no idea why. I’ve become so self-consumed with this invisible illness that not only can nobody else see, many are convinced only exists in my head, that I bore myself. In social situations, I wouldn’t have any interest in getting to know me. It’s one thing to be unattractive and feel that makes you wish to keep away from social situations. It’s another to realise just how tedious your company is, to both yourself and others.
I sent this e-mail to The Guy I Am Currently Dating today. I wish my doctors could see it, too.
“Every day is different. Most days are crappy.
Something is WRONG with me. Nobody will pay any attention except to tell me how anxious I am. But there’s pressure on top of my head that crushes my skull and makes my head numb—always at the same place— my heart races, I can’t stand loud noises or things that vibrate, I hate light, I feel dizzy at a drop of the hat, there’s often pressure in the arteries of my neck, my right arm sometimes goes numb, pressure bothers both of my ears, and I gain weight constantly.
Nobody is going to care or take my situation seriously until I’m not alive anymore. But there is something physically wrong with my body that isn’t being treated, and it keeps me from even enjoying the time I do have to be alive and young and vibrant.
I want my life back. I do not want or find value in the life I have now, because these physical issues take the joy out of everything. It is so hard to have a simple good day. Most days, trying to do so seems to take too much effort.
Yes, I am anxious and depressed and panicky. Because the way I feel isn’t normal. I am not anxious or depressed or panicky about other things. I am anxious and depressed and panicky because of these physical issues that are robbing me of my life. I’ve gained almost a fifth my body weight in 7 months, but I also aged 10 or 20 years.
If I could live like this for 40 more years, or just have one or two years where I was the way I used to be, I’d pick the latter. I used to see life as big adventure. Now it’s just another day of struggle after another, and knowing there’s no end to it, that “it’s all in my head”…I don’t know how to handle that.
I know they’re not right. I know my body and my mind. And I get really depressed and anxious BECAUSE anyone who can help me dismisses me. But people don’t go to the beach, get a horrible 2nd degree sunburn, develop an infection because their parents tell them it’s nothing, collapse from panic attacks for two weeks, and turn into an entirely different person. Mentally, emotionally, psychologically, I am the same person. But something happened to my body and it changed EVERYTHING.
It is my body that’s different, and perhaps it’s also the never-ending “let’s try this” approach with drugs and tests. And as a result of all the “let’s try this” and “nothing’s wrong with you”, I’m constantly anxious because something is wrong inside my body, and I just intuitively know that nobody knows it but me. I’m not being a hypochondriac; I don’t necessarily think I have a brain tumour or something wrong with one of my arteries or cancer somewhere in my body. It might be something as minor as hormones, or something that got damaged by my illness this summer and just needs the right treatment. But until someone tells me what it is, every day I have any weird symptoms at all, I’m afraid. I’m afraid that by the time a doctor finds out what it is, it will be too late to fix it. I’m afraid to be one of those people I read about posting on the internet message boards who have been sick for a decade and don’t know why, and don’t have the resources or know the right people to actually get a diagnosis.. I don’t want to give up my younger years to an illness nobody understands.
My mind and my feelings are perfectly fine. I am just sad and panicky because my body does weird stuff that interferes with my quality of life. When my body no longer does the weird stuff, I will go back to being the person I used to be…not necessarily happy or calm, but not wondering every day if today is the day I’m going to die because there’s something on the right side of my body interfering with my brain and heart and ear and internal organs. Even my right knee is the broken one.
I just want someone to understand and find me some answers so I can go back to living my life and planning for the future. And so I can *have* one.”
That is how I feel today. I have a list a mile long of things that I want to do; but it’s necessary for me to be healthy and energetic and young and attractive and friendly and vivacious in order to live my life on my terms. I am too stubborn to be willing to accept these limitations will define me, will define my life, for whatever amount of it remains.
People my age should be worried about their careers and love lives and making the most of the prime of their life, not thinking about death and putting their affairs in order and making sure nothing has to be too complicated or unpleasant for anyone else on that day I inevitably don’t wake up.
Everything has changed, and I just want my life back. Even if it’s something I only get to have for a little while, I want to look and feel normal, to have some of the adventures that are still waiting for me, to know that I may not be around forever, but I have the energy and joie de vivre to not waste a single second or ignore a single chance for something amazing to touch my life.
Oddly enough, I do pray sometimes. I do attempt to meditate and calm myself. I do attempt to read about my symptoms in hopes of stumbling on to something 13 doctors have ignored, and relate to the thousands of people who post their stories of “Nobody knows what’s wrong with me, I’m scared, it’s destroyed my life, and everyone just says I’m depressed/anxious.” I do try to have a positive attitude. But like everything else, there are simply no answers, just more days passing by, while I watch them from my window.
I just want my life back. It wasn’t the best, it wasn’t the worst, but I was healthy, energetic, and always up for a fun adventure. I had my freedom. And, that, I value more than anything; more, perhaps, than life itself.