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How Social Media Has Made a Positive Impact on My Life With Chronic Illness

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Social media sure does get talked about a lot these days. The endless flow of pictures, videos, thoughts and opinions are posted all day, every day and it is often criticized for its negative effects on our lives. There is no shortage of distractions from our daily lives or people to compare ourselves to. The number of “likes” a post gets is often something we put way too much value in. In my experience though, social media has been a lifesaver.

I have a list of chronic illnesses that are not at all common or well understood in the medical field. I don’t know a single person I physically interact with who deals with the same kinds of issues I do on a daily basis. When I was first diagnosed with new daily persistent headache (NDPH) I remember feeling alone and confused and afraid. There is not a whole lot of understanding of this type of headache because the diagnosis is fairly new and rare. The first neurologist I had talked to basically just told me to get used to it because it’s not likely to go away and there aren’t really effective treatments. I didn’t know what specialists to turn to and we had no idea if chasing down second opinions would be a waste of time or if there was something serious that was being missed. When I met a friend as an inpatient, we kept in touch via Facebook and she introduced me to others who were dealing with similar struggles. Suddenly there were people to bounce ideas off of with personal experience in the life of constant head pain. I found out that while there hasn’t been a cure discovered yet, there were many options to manage symptoms that I hadn’t tried. It gave me hope that I still had doors not yet opened.

Fast forward a few years to my POTS diagnosis. Through Facebook groups I had already learned that this is a condition often co-morbid with NDPH. When the symptoms started showing up I wasn’t terrified something was majorly wrong with my body and was armed with the knowledge of how to best manage it.

Without those people sharing their stories, I would never have heard of POTS or dysautonomia before and probably would have been pretty freaked out that I was suddenly blacking out every time I stood up. I also knew that this isn’t a super common condition and not every doctor is well educated on it. When appointments weren’t productive, I wasn’t totally defeated because I knew a lot of people go through that same experience and you just have to keep advocating for yourself.

When I first brought up the question of Lyme disease to my primary care doctor, he asked me if I had rashes. When I said no, he shrugged his shoulders and ordered an ELISA test to appease me. I didn’t know at the time that that test is horribly inaccurate and I needed to find a Lyme-literate doctor to be properly tested. Thanks to Instagram I was able to connect with others who were also fighting chronic Lyme and found out just how tricky this disease is, how to fight for myself and what I can do to best help myself. Without that I probably would still not know the underlying cause of each systemic problem and would be managing symptoms at best, rather than fighting the cause.

I had a neurostimulator implanted in November 2016 to help control the head pain from NDPH. This is still experimental according to the FDA as these spinal cord stimulators are most often used for nerve pain originating from somewhere in the spine. A friend of mine from college had gone through her trial phase to control her chronic migraine and when she had great success, she reached out to me about it. I had never heard of this procedure before. Without the help of Facebook, I wouldn’t have known how to fight for insurance approval, what to expect with the surgeries, which neurosurgeon had the most positive outcomes or how to best use this new tool.

I can’t even begin to explain how helpful it has been to connect with other chronic Lymies in figuring out just what this disease entails. I found my LLMD through the International Lyme and Associated Diseases (ILADS) website’s doctor search and it has been a complete game changer. I finally have a doctor I am confident in and feel as though she is just as invested in this fight as I am. We finally have the positive test results to back up the symptoms I’ve been dealing with for years and are treating the root cause. After so many years of floundering for symptom management, I couldn’t be more grateful!

These are just a few examples of the ways social media has positively impacted my life with chronic illness. There are so many other examples I could share about how social media has kept me connected to others while not being able to interact physically with the world much of the time. I’ve been shown wonderful love and encouragement from those I’ve met online and I can’t imagine where I would be without that. There are many flaws with these websites that provide an open platform for us to say pretty much anything we feel like saying, but there are also wonderful benefits. So thank you, social media, for helping me learn, making me feel less alone and for introducing me to some amazing warriors and friends!

Getty Image by oatawa

Originally published: March 9, 2018
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