So, let me preface this by saying I am not a blog person. I don't like them, I don't read them and I think a lot of people that have blogs have no business having them---unless it is something that is actually useful to others. Here's where I come in:
A year ago, I was diagnosed with chronic myofascial pain syndrome and joint hypermobility syndrome with subclinical hypothyroidism. 19 doctors (specialists), 3 chiropractors, 4 PTs later and nearly 40 (40!) different drugs later, I am finally on the officially road to recovery and it took a lot of bullshit to get here. Funny story, there is little to nothing on the internet about any of this. But, I think a lot of people secretly share a similar story.
In my daze and very long string of painful nights for nearly a year and a half on end (or as the very quietly known chronic pain/"invisible illness" community likes to call it, #painsomnia), I vigorously searched the internet, not only for general information about any of my new diagnoses, but just anything I could find with anyone dealing with this. Aside from a few really depressing tagged someecards.com and foam rollers on Instagram, the internet was not giving me anything.
This astounded me. I thought "Someone's gotta be dealing with this somewhere and overcoming it." I wanted something positive, someone I knew that was dealing with it somewhere and knew all the answers. (Fun fact: I am not a support group kinda gal. I didn't feel comfortable venting about my issues to strangers or anyone--I was just hoping someone else would.) The outlook was not good and since I've been sick, in a backwards way have discovered friends and acquaintances (particularly girls in their 20s) dealing with some sort of chronic pain/disability/invisible illness. I now know people who are chronically dealing with fibromyalgia, sciatica, chronic fatigue syndrome, diabetes, systemic mastocytosis, cancer (if you want to file it under that), serious and rare heart conditions, debilitating migraines, rheumatoid arthritis, Celiac disease, etc. forcing a lot of them (including myself) to uproot their lives leaving work and friends, move home with their parents and work on getting better. According to one study, more than 125 million Americans have at least one chronic condition (defined as a condition that lasts a year or longer, limits activity and may require ongoing care) and nearly half of those have more than one.
I have been debating writing something about this for quite some time, be it a blog, article (hopefully eventually), what have you and trust me, everyone has their very own special opinion about my situation. (Read as: probably inaccurate and very judgmental.) Because this is a medical issue and I am not ever this open about my private life, unless it's posting pictures of my Weimaraner puppy on Instagram, I have been pretty incognito and generally isolated throughout this entire experience.
But, in the least cliche way I can articulate, this has become bigger than me. If even one person comes across this trolling the internet in pain looking for anything, I hope this blog will give them some comfort and peace of mind (as much as you can bring to anyone dealing with this sort of shit.) I want to share my story and inform the internet of what no one tells you when you're dealing with chronic pain as a 20-something. Although my main intention is not to benefit the non-chronic painers (making up words, sorry.), I hope it is as equally informative for anyone who stumbles upon it. For caregivers, friends and just plain old people who want to understand more from a first hand "sufferer", (I hate referring to myself like this, but it only seems appropriate in this context.) I can only hope this will bring along an understanding and awareness that wouldn't be found otherwise.
A year ago, I was diagnosed with chronic myofascial pain syndrome and joint hypermobility syndrome with subclinical hypothyroidism. 19 doctors (specialists), 3 chiropractors, 4 PTs later and nearly 40 (40!) different drugs later, I am finally on the officially road to recovery and it took a lot of bullshit to get here. Funny story, there is little to nothing on the internet about any of this. But, I think a lot of people secretly share a similar story.
In my daze and very long string of painful nights for nearly a year and a half on end (or as the very quietly known chronic pain/"invisible illness" community likes to call it, #painsomnia), I vigorously searched the internet, not only for general information about any of my new diagnoses, but just anything I could find with anyone dealing with this. Aside from a few really depressing tagged someecards.com and foam rollers on Instagram, the internet was not giving me anything.
This astounded me. I thought "Someone's gotta be dealing with this somewhere and overcoming it." I wanted something positive, someone I knew that was dealing with it somewhere and knew all the answers. (Fun fact: I am not a support group kinda gal. I didn't feel comfortable venting about my issues to strangers or anyone--I was just hoping someone else would.) The outlook was not good and since I've been sick, in a backwards way have discovered friends and acquaintances (particularly girls in their 20s) dealing with some sort of chronic pain/disability/invisible illness. I now know people who are chronically dealing with fibromyalgia, sciatica, chronic fatigue syndrome, diabetes, systemic mastocytosis, cancer (if you want to file it under that), serious and rare heart conditions, debilitating migraines, rheumatoid arthritis, Celiac disease, etc. forcing a lot of them (including myself) to uproot their lives leaving work and friends, move home with their parents and work on getting better. According to one study, more than 125 million Americans have at least one chronic condition (defined as a condition that lasts a year or longer, limits activity and may require ongoing care) and nearly half of those have more than one.
I have been debating writing something about this for quite some time, be it a blog, article (hopefully eventually), what have you and trust me, everyone has their very own special opinion about my situation. (Read as: probably inaccurate and very judgmental.) Because this is a medical issue and I am not ever this open about my private life, unless it's posting pictures of my Weimaraner puppy on Instagram, I have been pretty incognito and generally isolated throughout this entire experience.
But, in the least cliche way I can articulate, this has become bigger than me. If even one person comes across this trolling the internet in pain looking for anything, I hope this blog will give them some comfort and peace of mind (as much as you can bring to anyone dealing with this sort of shit.) I want to share my story and inform the internet of what no one tells you when you're dealing with chronic pain as a 20-something. Although my main intention is not to benefit the non-chronic painers (making up words, sorry.), I hope it is as equally informative for anyone who stumbles upon it. For caregivers, friends and just plain old people who want to understand more from a first hand "sufferer", (I hate referring to myself like this, but it only seems appropriate in this context.) I can only hope this will bring along an understanding and awareness that wouldn't be found otherwise.
I just wanted to say thank you for posting about your personal experiences. I have considered doing the same but I worry about my clients coming across my blog.
ReplyDeleteI turned 30 this year and the past 2 and a half years have been pretty difficult. I was in a car accident in 2013 that was pretty minor but my neck and shoulders locked up to the point where movement became impossible. Only after starting physical therapy did my PT finally figure out what had been a series of mysteries to me. She told me that my joints were extremely hypermobile and the hundreds of ankle, knee, wrist, hip, and other joint injuries that had happened over the years made sense. In addition, the recovery from the car accident was going to be a long one and I am still having issues to this day.
Then last year, I went in for a routine exam and was called back a week later and told I needed to have a biopsy immediately... the next day in fact. They found cancerous cells but I was lucky because it was caught early and surgery removed it all (hopefully!) But there were side effects from the surgery and now I am in a whole different sort of chronic pain, the kind that weakens your resolve to live (not like I'm suicidal but there are days where it would just be easier to not exist I think). I'm glad I came across your blog because so often I feel alone. I think to myself that these are not issues someone so young should be facing and I feel alone. So thank you for making me feel less alone. And I swear to god if I hear one more person tell me to stand up straight, I may beat them (not really, but I will yell!)- but how could they understand the impossibility for me? If I stand up straight, a rib comes out and then my day is done... it's muscle relaxers and cold/hot packs for the rest of the day!
Aw, Alisha, sorry I am just getting back to you now! (I'm better with email) But this seriously made me tear up! I am so happy my blog has helped you. Chronic pain is a lonely thing! I am often tempted to beat up a lot of people but recently took up boxing (despite the EDS and I LOVE it!!). I'm all about the muscle relaxer/hot pack days! Currently having one of them now. :)
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