Finding Fulfillment After My Diagnosis

When you're sick, you begin looking for answers. This search may be lengthy or relatively short, especially depending on your specific condition. But, what happens after you finally find what you've been looking for? When you spend months or even years searching for a diagnosis, what happens when you are finally given the correct one?

My search for a diagnosis was not a long one compared to some. I experienced my first symptoms of Ehler-Danlos Syndrome at 21 and was diagnosed three years later at 24. When the geneticists confirmed that I was suffering from an organic problem I immediately felt a sense of relief. "Finally! Someone understands I'm NOT crazy!" However, the initial relief was only temporary.

When I first started experiencing symptoms of neuropathy and dystonia (my first major symptoms) I had many tests run. After test after test started coming back negative, my neurologist suggested I start seeing a psychiatrist instead. My neurologist suspected I had Conversion Disorder which is now referred to as Functional Neurological Disorder (FND).  I can remember when I first saw my psychiatrist. I explained to him that I had a lot of neurological symptoms that they couldn't quite figure out. He explained that he sees a lot of patients like me. He told me that when other doctors get tired of looking for an answer they will typically try to refer a patient for mental health evaluation. He was confident that they eventually would find a cause for my problems, but he promised he would help me the best he could until then.

My psychiatrist did make good on his word. He prescribed me Wellbutrin, which helped with my fatigue, and Cymbalta, which helped with the nerve pain. He also encouraged me to start seeing a therapist.

But, after they did finally find the cause of my problems I thought I would be happy. Instead, I was sad. I was sad because know I knew I couldn't get better because I wasn't "faking it." I was sad because there actually was something wrong with me. And, I was sad because now I knew I was going to get worse and develop additional problems later on. I was excited because I could now get proper treatment, but I was overwhelmed by the amount of actual care I was going to need. Getting a proper diagnosis came with a lot of changes. I had to change my diet, the way I exercised, I had to start seeing a new physical therapist, and add more specialists to my growing list of doctors.

I began to feel more and more dread as the relief from the initial diagnosis wore off. "If I'm this sick in my 20's how am I going to feel when I'm 40? Or even 50? What type of jobs can I do? How am I going to cope?" 

I did have a reason to be concerned. According to the Bureau of Labor Statisitics, those with a disability are less likely to have earned a bachelor's degree. They are twice as likely to be unemployed compared to their non-disabled peers. And, those that do work are more likely to work part-time, "In 2018, 31 percent of workers with a disability usually worked part-time, compared with 17 percent of those without a disability."

Although school and work are not the only things worth living for, they do provide a sense of purpose in one's life. It's incredibly easy to feel sad when we watch our peers graduating from college and going on to find jobs when we feel we are stagnating at home. I know I felt the sting of jealousy when my friends started graduating while I sat at home on medical leave. It's tough because I felt useless. I felt like I wasn't living up to my potential. I quickly became depressed and I wasn't alone. According to the Cleveland Clinic depression is the most common complication for those with a chronic illness. They estimate that as many as one-third of those with a serious medical condition display symptoms of depression.

So, how did I begin to find fulfillment after my diagnosis? I will say that it's not a one-time thing. It's a process and something that must be continually worked on. One thing I will recommend to everyone, for those that can afford and have access to therapy it's absolutely something you should do. You are going to grieve your old self and your future plans. That is okay and is completely normal! It's also a lot easier to do with a therapist who can help guide you. The first thing I did after I got into a good space was to determine what my goals were. I knew I wanted to go back to school and get my bachelor's degree and I knew I wanted to return to some type of work. I then determined what my abilities were. I really wanted to go to a brick and mortar school and get my degree in psychology, but I knew that wasn't practical. For one, I have limited mobility and traveling across campus would be difficult. And, I'm frequently sick and it can be difficult for me to leave the house. So, I decided to go back to school to get my degree in Marketing Management at Western Governors University. It's 100% online and self-paced, so I could do my work when I was able to. (And, I'm happy to report that I did officially graduate last month). For work, I knew I would be really limited in what I could do outside of my home. So, I decided to research different telecommuting options. I decided it would be best if I could make my own schedule and took a job with Liveops, a virtual call center. After I earned my degree I accepted a similar job in the insurance industry (only earning much more money). At the same time, I launched my own business as a wedding officiant. I typically do about 20 weddings a year, and absolutely love it. I even tried my hand at blogging and writing (as you can tell)!

I still really struggle sometimes. It's hard not to compare yourself to other people. And, it's easy to beat yourself up. Do I feel jealous because some of my friends and family work really high paying jobs? Yep! Do I sometimes wish I could go on for more education like some of my peers? Absolutely! But, I have to remember that I am not them. Every time I reach one of my goals I try to reward myself. I'll take myself on a trip to the mall or get my nails done. Sometimes I just allow myself to relax and I'll watch TV or take a long bath. Since we all have different abilities and circumstances it's really important to reward yourself when you do accomplish something really important to you! This can look really different for everyone. For someone, it might be earning their GED. For another, it might be finishing a piece of art they are making. For another, it might be launching their own online store. Or it might be something as big as finishing medical school!

How am I continuing my journey of self-fulfillment today? Since I've finished school I now have to modify my goals. For now, I'm just focusing on balancing my work with my self-care. My goal is to work 20-25 hours week and leave enough time to keep my current exercise and eating schedule (yay EDS for forcing me to eat every couple of hours!). I've been working really hard to hit 10,000 steps every day and I'm working on the Muldowney Protocol. I'm considering taking a few computer programming classes in Spring 2020. After that? I'm thinking of writing my first book.

For my readers, I suggest thinking of something you'd really like to accomplish (and is reasonable). Do you want to learn a new hobby, train your own service dog, or learn a new language? Maybe you want to work on being more mobile or start occupational therapy so you can adapt your home to be more accessible. Once you decide on that set small, daily goals for yourself. A little bit adds up over time. And, if you fall behind for a few days don't beat yourself up. Just try again the next day. When you finally achieve your goal make sure you reward yourself in a meaningful way!

We're all on this Earth for a reason, what's yours?