I spent a long time thinking about whether to post about my health issues on Facebook or not. What would people say? Would I lose friends? Could it come back to bite me in the butt later? In the end I decided that it was a risk I was willing to take. I was tired of having to explain myself to every person individually and thought this might make that easier. As it turns out, it worked pretty well! Obviously not everyone I know saw it, but I have had interactions with people after they saw the post and I loved that I didn’t have to start the story from scratch.
Another reason I decided to post about it is I saw other friends share challenges they faced (health and otherwise) and found myself grateful for their openness and vulnerability. I thought that if I appreciated their candor so much, perhaps others might appreciate my own.
I did worry that I might get some negative reactions from people, but I haven’t had anyone close to me react negatively, at least not to my face, and if anyone else saw my post and thought badly about me they kept it to themselves. Every reaction shared with me, whether from close friends or people I hadn’t spoken to in years, was positive.
Privacy Precautions
This isn’t to say that I didn’t take any precautions. For starters, most of the information on my Facebook profile can only be seen by people I am friends with, and my default privacy setting for new posts is “Friends Only.” This gives me a base level of control over who can see my information. One of my worries over posting was whether it could give me problems in the future while job hunting since it seems we all have to worry now about what pops up when someone Googles you. By my understanding, potential future employers should not be able to see my post unless we are or become “Friends” and I let them see it.
If you are already friends with anyone that you don’t want to see your post, you can exclude them either individually or by putting them on a Friend List that you then exclude as a group. This is done by changing the privacy to “Friends Except…” and searching for the list(s) and/or individual(s) you want to exclude. There are two ready-made lists that work well for this purpose: Restricted and Acquaintances. Someone on the Restricted list can only see content that you mark as “Public,” which automatically keeps them from seeing posts that are only shared with “Friends,” and someone on the Acquaintances list can be easily excluded using the method mentioned above when you post. These settings can also be changed after posting.
Facebook definitely has its issues when it comes to privacy, but they do have a helpful privacy page with information about controlling who sees what content you share. It would be a good idea to check it out before posting since they can always change how things work and the information I include may no longer be accurate.
When and What I Posted
After I had decided that I did want to write and share a large post about my health, I had to decide what all to include. “When?” was a less important question, but I knew that “Unrest,” a wonderful documentary made by and largely about a woman with ME/CFS, was going to be shown in theaters soon (this was in the summer/fall of 2017; the film is now available digitally from multiple sources), so I decided I to time my post with the film premiere and include information about it.
As for the “What” question, I started by thinking about questions people tended to ask and addressed them. I talked briefly about how it all started, what my symptoms were, what I most likely had (at the time I didn’t know about POTS yet so it wasn’t mentioned), a request to not be sent advice, why I was sharing, what I was up to at the time, and what others could do to help.
Without further ado, here is the text of my post with some links added in case this information is helpful for any of you reading this now and because I didn’t know how to add more links to a Facebook post:
Anyone I’ve spoken to in the last year or so has probably heard me kind of brush off questions like “How are you?” and “What are you up to these days?” Some of you may have heard me make a vague reference to “health issues” that came up during my last year of grad school. I hesitated for a long time about sharing my story somewhere this public, but it’s been long enough that I don’t think anything is going to change any time particularly soon, and I’d like for people to know what’s going on. Warning: Long and personal post ahead.
About two years ago (end of August 2015) I was in grad school in San Diego getting my Master’s degree in speech-language pathology with two semesters left. I’d just had a month off between the summer and fall semesters, and said goodbye to my short summer break with a very fun weekend that included a friend’s wedding and a trip to Disneyland. During the week that followed, as classes slowly started back up, I found myself feeling completely drained and like maybe I had picked up a bug that my body was fighting off. I thought I just needed a good weekend of rest to shake it off and get myself feeling back to normal. When that didn’t work, I went to my first of many doctor’s appointments, did my first of many rounds of blood tests, and was told for the first of many times that everything came back normal and it was “probably just stress.”
Well, here I am now, two years since that last good weekend and over a year since graduating (still not sure how I managed to pull that off), and I’m more or less in the exact same place. In that time I have:
-Gone on a post-graduation trip to “de-stress”
-Rested in San Diego
-Moved home to San Francisco
-Rested some more
-Seen a lot of specialists
-Lost count of the number of vials of blood that have been taken in the lab
-Had several other tests done, including two sleep studies, allergy testing, a head CT, EKG, and others
-Felt discouraged over and over again as I was told, “Good news, your test results are normal”
-Realized how completely backwards it feels to think that wayAt this point, the diagnosis that has come up the most is Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis (ME) or Systemic Exertion Intolerance Disease (SEID), but most often as ME/CFS (combining those first two). It has no diagnostic test or evidence-based treatment so my doctor doesn’t want to officially diagnose me with it, but it’s the best I’ve got for now. There is a large patient community, primarily online, and talking to people with ME/CFS feels like talking to people who get it. I don’t have to explain wanting to sit down every chance I get, or needing to wrap up a conversation because my brain is too tired to follow it anymore. There is likely more than one condition currently caught up in the ME/CFS label that will eventually be teased apart as the research progresses (e.g., many people get it after having an acute viral illness, which I didn’t), but for now we seem to understand each other and I find a lot of comfort in that. So, for now anyways, these seem to be “my people.”
“But I get tired, too!” Yeah, this condition has a pretty awful name that means a lot of people don’t take it seriously, which sucks, especially when you combine it with the whole lack-of-a-diagnostic-test thing. Please understand that I was a very busy person for most of my life, often balancing school with multiple extracurricular activities usually involving dance. Trust me when I say I know what normal tired feels like, and this is definitely not normal tired. I’ve had a checklist for years that I run through when I don’t quite feel right: water, food, sleep, and movement. Normal tired was always fixed by filling in any gaps in these key areas. Naturally, these were the first things I tried to fix in my attempt to feel better and, two years later, they still have not solved it. Don’t get me wrong, messing up any of them makes things worse, but the best I can hope for on any given day, even keeping these in order, would have been considered pretty bad before this all started.
You know that feeling after something like finals week, where you are pretty chronically sleep-deprived, have been running around to study sessions and finals and other end-of-the-quarter/semester activities, and by the end you are just physically and mentally exhausted to the point that you don’t even want to go out to celebrate but just want to curl up in bed? If I do pretty much nothing for a few days besides sleep and rest, I can hope to feel about this good. Let me repeat: That bone tired feeling is what I now aspire to and would be considered a pretty good day by my current standards. Oh, and I’ve had persistent nasal congestion for almost the entire time this has been going on, too.
Now, if I start to actually do things (e.g., shower, cook, clean, leave the house, do something cognitively taxing, not get enough sleep, etc.), the fatigue gets worse and I need to rest more, and any number of several other symptoms could join the party depending on how far I’ve pushed myself. These may include: brain fog, dizziness/lightheadedness, muscle/joint/bone aches, headaches, visual/auditory/tactile sensitivity, lack of appetite, nausea, digestive issues, chills and/or overheating (no fevers, though), poor sleep, heart rate shooting up from minimal activity, and a general feeling like my body has turned into a pile of sandbags I have to lug around. For added fun, sometimes I have absolutely no idea what triggered a worsening of symptoms. Sometimes I can feel it coming, and sometimes it hits me out of nowhere. However, because I am not bedbound and am not fully housebound like a lot of people with ME/CFS are, I would say, even with all of this, that I probably fall in the mild-moderate range of illness severity. So yeah, ME/CFS is a little more than “just tired.”
“But you don’t look sick!” This is a bit of a blessing and a curse. It’s a blessing because who actually wants to look sick?! But it does seem like invisible illnesses are often taken less seriously, and even those who know how serious they are can easily forget about them since there is no visual reminder. Also, if you see me out in the world, chances are you’re seeing me on a good day. I may also be pushing through a bad or okay day and just faking it, which I did for most of the last two semesters of grad school, but I’m trying not to do this so much now because of how badly I pay for it (see list of symptoms above). Pacing myself now means that more of my days are relatively good days, though it also means I do a lot less on these good days than I used to. If I’m having a bad day, I’m probably staying home.
Am I looking for advice? No, not really. At this point I have tried a lot of things, still have a lot of things I want to try, and also have a lot of things I’ve heard/read about and thought about and for whatever reason have decided not to pursue at this time. There are still specialists I want to see, but I also want to take breaks every now and then from constantly trying things to just “be” for a bit. All of these experiments and specialist appointments take energy, and that is not something that I have a lot of, so please understand if you talk to me and I don’t have any immediate health plans lined up – I have not given up; I’m just taking a breather. If you have some potential cure or treatment to tell me about, please know that I spend a lot of time researching this and there is a really good chance it’s already on my radar. If you really want to make sure I don’t miss it, feel free to send it my way, but please know I may simply thank you and leave it at that. If I want to talk to you about it more, I will, but please let me be the one to pursue further discussion.
So why am I telling you all this? To give you insight into what I’m going through in case we cross paths out in the world and you notice me looking for a place to sit or a wall to lean on, or maybe my eyes seem to keep glazing over and I just look exhausted; in case I make plans with you and have to bail at the last minute because I’m having a bad day; because life on social media often just shows the good times and this feels incredibly misleading; because ME/CFS is so poorly understood and can take all the advocacy help it can get; but mostly because this seems to be my life for the time being and hiding it was getting pretty exhausting, too!
So what AM I up to these days?? Well, I’m still living back home with my parents in San Francisco, being very grateful that I have such a wonderful family and hometown to come back to. As mentioned, I am still seeing specialists and pursuing potential treatment options that at least have a low chance of making things worse, even if the odds of them helping are low, too. I am trying to keep up with new ME/CFS research and starting to get involved in advocacy efforts (a little more on that below). I am also learning to live within these new limits and trying to figure out how to make the best life I can within them. And I’m enjoying the opportunity to spend time with my nephew and read Harry Potter with him.
What can you do to help? Maybe I’m being a little presumptuous in assuming you want to help, but I figure anyone who has read this far may be wondering this. The main thing you can do is believe me when I say that I know something is physically wrong with my body and that I am doing the best I can to weed through the massive mess of information I can find and figure out what is best for me. If you want to hang out, don’t invite me to go hiking or dancing. Invite me to do something relatively quiet that involves frequent sitting, like getting tea, sitting in a park, watching something on Netflix, or maybe seeing a movie depending on the day. Better yet, offer to come to me, or to pick me up, or make sure it’s somewhere easy to get to. I don’t think there’s much direct help I need right now (thanks, mom and dad!), so I’d rather direct you to the bigger cause…
Check out the wonderfully done documentary film “Unrest” by Jennifer Brea (trailer included with this post), a woman with ME/CFS who worked on this film primarily from her bed. (She also has a great TED Talk you should watch.) I had the chance to see “Unrest” at a local film festival a few months ago, and it is coming to theaters in a few cities around the end of September, with additional community screenings coming, and will be on PBS sometime in 2018. Most of the people shown in the film have much more severe symptoms than I do, but the overall expression of their experiences resonated with me very strongly. You can find more information at www.unrest.film, and I will also be posting more about it as things develop. If you can afford it, you can also donate to ME/CFS research and/or advocacy organizations, such as the Open Medicine Foundation, the Solve ME/CFS Initiative, or #MEAction. All you Amazon shoppers can do your shopping at smile.amazon.com and set your charity to the Open Medicine Foundation so that a small percentage of most of your purchases will be donated at no extra cost to you.
This is actually a relatively exciting time for the ME/CFS world because a lot of research has been coming out lately pointing to various biological markers that could eventually lead to a diagnostic test and identification of the disease mechanism which should one day point to treatments and/or a cure! By my understanding, it’s currently sounding like it’s some sort of hypometabolic disorder related to an immune dysfunction, possibly with an autoimmune component, but there are a few different theories out there. A controversial study that claimed to prove that therapy and exercise were the best cure is also being shown to have been a very flawed study, so this potentially harmful recommendation is slowly being removed from official websites. (The CDC has already taken it down, but many other places haven’t…yet.) As much as I wish the many doctors I’ve seen had actual answers for me, it is at least a sign of progress that they keep telling me they believe my symptoms are real and have stopped telling me it must be stress.
Phew! This took me several separate sessions to write and proofread due to my brain pooping out on me, and it turned into quite a monster of a post. If you have any questions, feel free to ask and I’ll eventually try to answer. Thank you for reading!!
p.s. The other thing that comes up when I see people I haven’t seen in a while is that my hair got curly. In all the time I’ve spent online in the last couple years while resting, I came across something that helped me realize that my hair that has always been pretty dry and frizzy right after washing was actually trying to curl! For more info on how I encourage it to be curly rather than straight, look up the “curly girl method” (guys can do it, too). It does take a little more effort than I used to make, but it’s nice to have some part of my body doing something that I like, and I’ve always kinda wanted curly hair so I’ve stuck with it!
(And then an image and link to the “Unrest” trailer showed at the end because I attached my post to a video.)
I hope this was helpful! For me, it seems that sharing was a good move, but I know it will vary a lot person to person and situation to situation. So what about you? Have you posted about your chronic illness(es) on social media? Why or why not? If so, how did it go?
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