Learning to Live with an Illness

I always thought of myself as a relatively healthy person, there was never anything I had faced where my body just wouldn’t work. At 22 I started having symptoms bad enough to interfere with my everyday life. Even after seeking medical care, it took 2 more years to get an official diagnosis. That means, for over two decades of my life I had thought of myself one way and now that definition didn’t seem to fit anymore and I was lost.

Now I was taking different medications, eating different foods, watching my heart rate closely, constantly wondering if I was drinking enough water and making sure I wouldn’t be standing too long and hoping this wasn’t the day my body decided to be difficult. It’s completely consuming in every way. It’s all I could think about, focus on, worry about. There were so any new words to learn and research to be done- my life had completely changed.

With all this change I realized how very, very lucky I am. I have an amazing healthcare team who diagnosed me much quicker than most people are- she didn’t dismiss my complaints and never stopped working to figure out the cause of my symptoms. I have a supportive family who took me grocery shopping to find new foods to try, sat down and helped me make lists of what I could do, went to doctor’s appointments with me and never told me it was too much for them. I also have an incredible husband who takes care of my when I’m having a bad day, tries new foods for my sake (and never complains that cauliflower rice is not as good as real rice) and helps me make good decisions for my health when I run out of energy to make them myself.

Despite all this, there is a lot about dealing with a physical illness that these wonderful people can’t help me with. Dysautonomia is often called an “invisible illness” meaning that if looking at me on the street, you would never suspect anything is wrong. In a lot of ways this can make it harder to deal with because people who don’t know you expect you to be normal. They expect you not get tired easy, not have to sit down the majority of the day, not have to constantly make sure you are eating and drinking enough throughout the day and not pushing yourself too hard. I was surprised to learn just how much the world expects you to, and needs you to be normal. This entire process has been a masterclass in patience and never judging others- there is absolutely no way to know what someone is going through or how hard it is for them to do something just by looking at them.

Life is hard for everyone, but when your body decides to stop working properly it can make an average day a struggle and the hard days damn near impossible. There are some days at work I feel fine, and there are other days where every task is a struggle to finish. Learning how to work with my body and not fight it, while still having to live my life, is something I work on daily. The hardest thing I have had to learn to do, especially for my personality, is to admit something is too much. Sometimes I have to just lay down and take a nap, even if we had plans. Sometimes I have to call into work because pushing through is only going to make things worse. Learning that balance between not giving up and knowing when to stop is my biggest challenge. Accepting that my body just can’t do things sometimes is incredibly frustrating- but then I remember how far I have come since that first doctor’s appointment and realize I still have so much farther to go.

Getting diagnosed with an illness is life changing, but it doesn’t mean your life has to be worse. I love sharing my journey with people and answering questions when they have them- knowledge is everyone’s biggest asset. When people find out about my Dysautonomia or about all the changes I’ve made, they usually just remark how they could never do something like that. The truth is, we all can. For me it took almost having to quit my job to make the big changes my health needed because giving up was never an option. But there is nothing special about. me- the stakes just got too big. But now, if I take a step back, I realize that despite all the struggles my life is better than it used to be. I eat much healthier and workout regularly (when my body lets me), and my body is going to be better for it. I have introduced people to new ideas and ways of looking at health. I live a cleaner life, which is better for all of us regardless of any health issues we may have. Most importantly, I have found a deep passion for something. I took this illness and decided that instead of letting it ruining my life I would use it as a stimulus to create a new life, one with a whole world of possibilities I didn’t even know where out there..

I know when facing an illness you will have times when you just feel alone and singled out. My biggest hope in starting this blog is to give people a place to go where they know someone else is struggling too. I want to share all the things I’ve learned, and all the struggles I’ve had (and continue to have), and all the progress I have made, in the hopes that someone else can have it a little easier than I did.