Friday 17 February 2012

There is something I need to say

Hello again.

It hit me that as of a few days ago, this blog, Gluten-Free Boulangerie, is 2 years old. But that is not what this post is about. This post is about why I've been away for nearly six months - and not just from the blog, or the comments that went unread until yesterday (for which I offer sincere apologies to all those asking questions I did not reply to). I've been away from everything. Emails sat unopened and unanswered. Those of you on Twitter maybe noticed I didn't make a peep. And for every day that ticked by, it became harder and harder to come back - you see, my life had been changed in a huge way, and it felt increasingly impossible to bridge the gap that formed between the "before" and "after," the "then" and the "now."

All of you with celiac disease already know all too well the stress of a chronic illness: the worry and fear prior to a diagnosis; the pain and exhaustion in parts of your body you didn't even know could hurt or be tired; the pain of not being believed by doctors, family, and friends - and maybe you even begin to doubt yourself. You know that a diagnosis will bring relief, in some ways, but that it also brings new kinds of fear, and worry, and pain. You know those desperate questions you ask yourself: How am I supposed to get used to this? When will this ever feel normal? 

Well...that's what I've been trying to figure out myself, all over again. And this time it's a lot harder to adjust to than celiac disease was. 

I had been in a holding pattern of uncertainty and lab tests for quite some time, up until a few months ago - over the past few years I was tested for things ranging from devastating autoimmune disorders all the way to easily-treated ailments, and a lot of things in between, and the only answers I got amounted to little more than "we still don't know." I had no idea what was making me sick, or how long it would last.

And then, partly thanks to the sheer luck of choosing a doctor who happened to have seen a "nearly identical" case a few years before, we were getting somewhere. I found out I met the criteria for "generalized hypermobility" - that means many joints all over my body are more flexible than normal, and not in a good way. (Unlike some very flexible people like, say, ballet dancers or gymnasts, my muscles cannot compensate enough to support my joints, meaning my joints are loose and unstable.) It was not a diagnosis in itself, but rather a central piece of the puzzle. That was October. Since then, all the medical evidence has confirmed my doctor's initial suspicion. There's still a piece or two that needs to be filled in - I'll be seeing a geneticist before the "finished" diagnosis ends up in my chart - but after all this waiting, I finally have a name for this thing that turned my life upside-down: Ehlers-Danlos syndrome. It's a genetic disorder which affects collagen, a protein which plays an important role in muscles, ligaments, tendons, blood vessels, and skin, among other things. There are several types, depending on where the gene mutation is and which type of collagen it affects (that's where the genetic testing comes in). In my case, the effects are extreme fatigue, muscle weakness, chronic joint pain (and frequent injury during normal activities because the joints are unstable), and circulatory issues which leave me frequently out-of-breath & lightheaded with sluggish, foggy thoughts (this makes things like communicating, reading, and writing difficult, and things like driving downright dangerous). There are other complications too, but the ones I've just described have the biggest impact on my life.

And they've been impacting my life for longer than I've let on - it's true I've gotten more ill over the past year or so, but I've known something was wrong, and had been searching for a diagnosis, since well before I even started this blog. (Technically, I was born with it; however, like a lot of people with Ehlers-Danlos, my symptoms - despite being present on some level since I was very young - did not become glaringly problematic enough to demand medical attention until my late teens.) And, as you can probably understand by now, over the course of trying to come to terms with all this I also became pretty depressed.

By this point you're probably wondering why I'm telling you all this "personal" information. That's a reasonable thing to wonder and, to be honest, the same question has flitted across my own mind. These are not easy things to say. Yet I feel it's something I need to do, for a few reasons. 

When I was still undiagnosed, I kept telling myself that the illness, whatever it was, could still be something "fixable." That once the doctors figured out what it was, I'd be able to repair what was broken and get back to my life. Sure, some plans had to be put on hold for a while, but I didn't really see it as a big deal; I kept trusting things would get back to normal, because the idea of not getting better was unfathomable. Instead, I found out that I will have this for the rest of my life, and that some of the complications will likely get worse with time. That I may not get to do all the things I had set aside for "when I get better." Unlike with celiac disease, there is no special thing I can change to make the symptoms go away. Of course I'm trying to be optimistic, but all the optimism in the world won't change the fact that some things are, at least right now, not physically possible. And the things that are possible are really, really hard - I can't even bake the way I used to. I got a mixer for Christmas, which does help a lot by taking over the strenuous stirring and kneading, but baking - which used to be my "therapy," the activity I could always count on for a sense of accomplishment and satisfaction - still requires energy that these days, I often simply don't have. Now, I'm trying to figure out if going to grad school - the main reason I moved here in the first place - is even a realistic option at this time. 

I went so long without mentioning the problems I was having because I didn't see them as part of my reality. It just didn't fit with how I saw myself. Even when I started having to walk with a cane, I was still in denial, of sorts. The cane may have made it obvious in the "real world" that something was wrong, but online, I could keep that denial alive - all I had to do was omit the unpleasant stuff, I reasoned, and I could continue to be me as I saw myself. Yes, I know just about everybody does that on some level; lots of people make their life sound a little more interesting or exciting or glamorous than it is, especially when they're doing it on the internet with the intention of getting people to actually read it (aka blogging). After all, no one wants to read a lot of complaining unless the writer manages to be really funny and snarky in the process. There are of course some bloggers who have that gift; however, I am not among them. (Which is really too bad, because the ability to pull off more snarky jokes would probably help me cope with the whole need-a-cane-and-I'm-only-22 thing.) (Actually, now it's a pair of canes, per the physical therapist's recommendation; since my wrist, elbow, & shoulder are just as hypermobile as my knees & hips are, putting all the weight on one side was causing new problems.) 

But the point I was getting to is that I am neither able nor willing to hold onto that denial anymore. Doing so would be dishonest, and what's more, I have no reason to. Either way, I am still just me.

Which brings me to another point. 

As it turns out, there's still a lot of stigma associated with chronic illness and disabilities in general, whether physical or mental, visible or invisible. On the internet in particular, where someone can speak from behind the veil of anonymity, I've seen some downright hateful statements. I haven't experienced any intentionally mean comments out in the "real world" in the relatively short time that I've been visibly disabled, but I know some other people with disabilities who have. More frequently, I encounter ignorance and misunderstanding: for instance, some people are quick to say things like "just get more sleep and you'll be fine" (it's not that kind of fatigue), or "it can't hurt that much" (yes it can, and it does), or "you're probably just too stressed-out" (don't even get me started on that one). These often-frustrating, occasionally-insulting experiences leave a lot of people, myself included, very reluctant to be open about having a chronic illness. 

...And that's exactly why I finally decided to go ahead and just be open about it. It hit me that if I want to help change how healthy people view people with chronic conditions, hiding my condition was one of the worst things I could do; on the other hand, one of the best things would be to just be myself plus a little extra honesty. Yes, I have a chronic illness. Yes, I am physically disabled. And I am still also a gluten-free baker, a food lover, a tutor, and a scientist, and a lot of other short, the stuff you already knew about me is still all true. When I put it that way, I know it seems like common sense. But given the way some people act, I think sometimes people forget that. 

That's really all I wanted to say for now. I'm really hoping I'll be able to start posting recipes again soon. But now, if I go a long while without posting, now you know why. If I take a while to respond to your email or comment or tweet, please know that I'm not just ignoring you. I'm still getting used to this, and I still have a long way to go, but I've put my life on hold for long enough now - I may not be able to "get back to normal" in the way I'd hoped, but I am ready to start living again, in whatever way I can. 


  1. I haven't been following your blog for very long but I am glad I do. Thank you for sharing this with your readers and I hope it helps you in some way.Your attitude is amazing and I am looking forward to future posts and recipes!

  2. People can be quite hateful and ignorant sometimes, but the most important thing to keep in your mind is that that is what defines them, not you. You kick ass because you are part of a whole group of people who are faced with more adversity than most and still do what you do!
    Hope this wasn't too much in the way of PMA, it's our first comment and we might have gotten carried away...we love your blog!
    Em, Layla & Ella

  3. I for one am glad to hear that you are ok, I had wondered where you had gone on twitter and I'm so sorry to hear about what has been going on. I can't even imagine all the pain you've been through in the past few months but I'm glad to hear that you're not going to "hide" anymore and are going to slowly get back into the swing of things so to speak. I know it'll take some time getting used to being social again after everything you've been through, but you know you're always welcome to come chat on Twitter about nerdy-science randomness or even just randomness in general!

  4. I appreciate your honesty. I think having the thoughts and experience of real people "out there" like this post help the currently-healthy to understand that illnesses don't define people. I suspect that when people make those rude and thoughtless comments, they are doing it out of fear at some level. A need to distance themselves from pain so that they can feel safe that it won't touch their own lives. I don't know.

    I encourage you to keep taking good care of yourself, find creative ways to do the things you want to do while respecting your limits. Your "audience" here can be patient.

  5. Thank you all for your encouragement and supportive comments. It really means a lot to me.

  6. Meg- I just came by your blog today after seeing your tweet about a new loaf of bread, and I am so sorry to hear about your struggles! I haven't had the guts to share more than little snippets with the internet about my "progressive & incurable" condition. It is incredibly depressing, and that makes it really hard to write a happy blog - a place that people go to escape their hectic lives. But, I feel that there is a need to be honest and share. I have found that the gluten-free community to be much more accepting than the real world. I haven't even told my coworkers about it - I plan on hiding it in real life for as long as possible because of the stigma in real life.

    I appreciate your honesty and hope that you can continue to be this strong. The chronic illness world needs people to open up and show that we are normal, strong people that deserve to be treated well. (this is maryfran from frannycakes)

    1. So sorry it took me so long to get back to you. I had no idea you have been struggling with something so heavy...if you ever do feel inclined to open up a bit more on your blog, consider that you may have unexpected support from readers who are also hiding their own struggles. (I've been surprised by the comments here, and the emails people have sent me regarding this post.) I of course completely understand your worries about that stigma - but I also know how overwhelming it can be to keep something like that a secret, especially when it gets in the way of doing things. Don't hesitate to email me if you ever need to talk to someone who "gets it."

  7. I think you are brave and honest and that's what the blogging world needs more of. We have lots of shiny, happy, people blogs but not enough ones who can help us understand the many facets that make up a real blogger. I have chronic severe allergies and eczema and have had most of my life and children were not kind at school. I definitely admire you for taking this decision and am selfishly glad to have you back because of the excellence of your recipes (and the excellence of your character.) Blog on! And thanks.


    1. Thank you. I am still finding it hard to keep up with everything (as you can see by how long it's taken me to reply to comments!) but I am glad to be back.

  8. I just found your blog and love the other posts I've read - you write so beautifully. My like-a-sister friend and my boyfriend have both been diagnosed with IBS, back and forth with celiac disease, and are always undergoing a barrage of other tests...and I have to thank you for writing really honestly and not at all bitterly about what you're going through. Wishing you the strength to keep doing the 'therapy' things you do, and the calm to not freak out on the off days (like I would surely do)!

    1. Thank you for your support and kind words. I'm surprised how many comments/emails I've received following this post from people who are struggling with their own health, or are close to someone who is. I hope your friend and boyfriend can find some definite answers soon.

  9. Just found your blog; sorry to hear about your diagnosis. One of my friend's children was diagnosed with this several years ago; he also has Down syndrome, which made just FINDING a diagnosis a real chore - there are so many things that most people will say, "Well, that's part of DS, isn't it?"

    I was diagnosed with Myasthenia Gravis back in 2010 - not nearly as devastating a disease (at least in my case) as ED is, but I can definitely relate to the "tired all the time" part. And when you "look" fine, everybody wonders why you aren't able to do the same things as other people.

    Thank you SO MUCH for all of your posts on making better bread - they have been a real help to this mom whose child was diagnosed with CD back in 2008 (the DS population has a much higher incidence of CD than the general population)! I found out that I am allergic to wheat (and have the CD gene), and hubs is gluten sensitive, so we've been at the mercy of flat, dense GF breads for the past 5 1/2 years....

    We will keep you in our thoughts and prayers, and hope that you are able to find some ease in your discomfort. If you ever need to talk, please feel free to contact me - my kids tell me I'm good at that (now that they're older....)