Yes, I’m pretty sure my resolution every year is to write in this thing more. Oops. But hey, at least I met my resolution of writing at least once a year, right?

It’s been a crazy year, for me and for everyone. I moved (same state, different area) and started a new job. I’m still with the same wonderful boyfriend who loves and accepts me, bag or no bag. I do have to say that I still have a hard time opening up about my ostomy to most people. I got really jealous when I was being trained at work because my trainer has a less stigmatized (though still difficult to deal with) medical condition and is able to talk about it so much more easily than I can. I wonder if I’ll ever be able to get to the point where I can really be honest about myself. A therapist I worked with earlier in the year didn’t seem to understand why I cared so much about that. She said I wasn’t obligated to tell anyone about my ostomy. What she didn’t understand is that it’s incredibly difficult to feel like there are two Sarahs, the one that is just like everyone else and the one who is just a little bit different.

Well, I hope that if anyone is reading this, they had as good of a year as possible. I also hope that everyone stays healthy, and that 2022 is much better than 2021 or 2020. Happy New Year, everyone!

This morning five years ago, I was at the hospital, about to go into surgery. It was the first thing I thought of when I woke up today. Five years later, even in 2020, life is so much better.

It’s true that life with an ostomy hasn’t been perfect. This year hasn’t been perfect, of course, due to the pandemic. I eventually found my dream job after surgery left me healthy enough to work… but I’ve been furloughed for many months now. Still, life looks a whole lot better. I’m extremely thankful for my (relative) good health now, this year and every year.

Five years ago, I woke up early, scared and sick, to leave for my surgery. This morning, I woke up in a beautiful apartment an hour away from that hospital, in a town I love, next to someone I haven’t told I love yet (but I will.) I told him it had been five years since my surgery, and he said “I’m glad you’re here with me.” And after everything– years of sickness, my surgery, blood clots, a slow healing process… I am, too.

I’m not sure lucky even begins to cover it.

So I know I said I would try to write more on here… and it’s been over a year since my last entry. Oops.

In all fairness to me, though, it’s been a busy year. When I last wrote on here, I had just finished the Child Life certification process and was looking for a job. That took longer than I expected, but I did eventually get a job as a child life specialist. I’ve been at that job for a little over seven months, and I love it. I also moved to New Jersey for said job, which I also love. (It was seriously my childhood dream to move to New Jersey… and at 30, I accomplished it. Who said dreams don’t come true?)

Aside from that, I’ve just been trying to live more. In all of those years that I was so sick, I really just went through life trying to survive. I just got out of a relationship, which unfortunately ended badly, but taught me that I need to be more selective. As my yoga teacher said today, it’s important to surround yourself with people of equal or better quality. That doesn’t mean you ignore people of lower social status, or who don’t make as much money as you, or anything ridiculous like that. It just means that you don’t surround yourself with people who are going to bring you down.

One of my main issues in life has been surrounding myself with the wrong people. (Don’t worry, if you’re reading this, it’s probably not you.) I tend to see the best in people and ignore signs that they might not be good for me. I also tend to be a “rescuer” and go for people who are damaged in some way, likely because I see myself as damaged. And yeah, I’ve been through a lot, but I’m not damaged. I refuse to see myself that way any longer. And if you’re reading this, and you’re sick, or you’ve been sick, or you’ll probably be sick again sometime soon– you aren’t damaged, either. You deserve great things.

I could close this by promising to write more, but unless I randomly get struck by inspiration, that probably won’t happen. I’m still keeping this blog to remind me of my past experiences, and I’m not officially closing it or anything like that, but it might be a long time before I write here again. (Or it could be next week. Who knows?)

Also: in December, it’ll be four years since my surgery. Time flies…

I can’t believe how long it’s been since I’ve posted here. Well, actually I can, because I’m not exactly the world’s most dedicated blogger… but still. I had a feeling I wouldn’t be posting this summer because of how busy I was, and that turned out to be correct.

One of the issues I’ve developed since getting sick is that I often don’t tell people what I’m up to. I’ve suffered numerous setbacks (career, relationships, etc.) due to my health and other factors, and it’s gotten to the point where it feels safer not to tell anyone what I’m doing just in case it doesn’t work out. I know that probably isn’t the best way to deal with things, and I want to stop doing it. I honestly feel anxious even mentioning what I’ve been up to on here, but hopefully taking little steps like this will help me start being more open with people.

I spent the summer in Buffalo, New York, which is about four and a half hours away from where I live. I mentioned having an internship in some of my earlier posts, and the reason I was there was to complete a Child Life internship. (If you don’t know what that is, more information about Child Life is here: http://www.childlife.org/the-child-life-profession) I was there for over three months, and had a great time. Buffalo is a great place to live (at least in the summer… not sure I would want to be there in the winter!) and I learned a ton during my internship.

As soon as my internship was over, I had to start studying for the Child Life certification exam, which was at the end of August. The exam is only offered three times a year, and if I didn’t take it now, I would have had to wait until November. I’ve taken career-related tests before, but this one was really tough. Unlike the teacher certification tests I took, this was one exam that covered everything, not multiple tests broken down into sections or subjects. There were a ton of recommended books to study, and I only had a couple of weeks to study after my internship ended. Needless to say, I had a lot of work to do.

I took the exam a week ago. Unfortunately, there aren’t any test locations near where I live, so I went to the nearest center about an hour and a half away. It’s a pretty long test, 150 questions, and they give you 4 hours to take it. I’m a pretty fast reader, which normally helps, but these were not questions you could skim through to get the right answer. It was definitely the hardest test I’ve ever taken. I finished in about two and a half hours, and once I submitted it (it was a computerized test), I had to go to the proctor and have her print a sheet that told me whether or not I had passed. I was so scared that I actually left the test center without looking at it and didn’t check it until I was out in the parking lot. Thankfully, I had nothing to worry about, because… I passed! I can officially use the title CCLS after my name. 🙂

So now I’m busy searching and applying for jobs. I also turned 30 a few days ago. My birthday was great, and I barely thought about my birthday diagnosis at all. Maybe I’m finally getting past that memory. There’s a lot of things I’m trying to get past, and hopefully being more open about who I am and what I’ve been through will help with that. Hopefully I can also keep up more with this blog, especially as I move forward and start my career in this field that I love.

When I was in the middle of the flare that eventually led to colectomy, my GI finally agreed to refer me to an IBD specialist. This was a necessary decision for both of us, as I wasn’t getting any better and it was clear that my GI (who didn’t specialize in IBD) had no idea what to do with me. At my last appointment with him prior to seeing the new doctor, he for some reason thought it would be helpful to engage in a disturbing conversation regarding surgery and my future. One of the things he said stood out to me so much that I still find myself recalling it three years later. He told me that if I did require surgery, obviously I would probably want a jpouch, but if I kept the ostomy for at least a little while, it would be easier for me to have kids. He then made a grimace and said, “But if you have an ostomy…” Yeah, I got it. No one would ever want me. I thought it was ridiculous and insensitive at the time, but considering it’s been over two years since I had surgery and I’m still single, maybe he wasn’t far off with his assessment. (Or it could be that getting my life together has taken top priority over dating someone.) Clearly, his expectations for my life post-surgery were pretty low.

What people expect of me and what I expect of myself seem to be worlds apart sometimes. During a Twitter chat yesterday, I mentioned that when people find out I have an ostomy, some of them act like it’s some sort of devastating crisis. It usually isn’t, although when I immediately leaked after changing my appliance this morning, it temporarily felt like one. Most of the time, I don’t think of myself as abnormal or disgusting or whatever negative things some people think about ostomates. Sometimes, though, it’s hard. It’s especially hard when I see how other people’s lives are going and think, if I’d never gotten sick, my life would probably measure up to theirs. It can be really difficult, especially in the social media age, to see everyone getting ahead of you in life, especially when all you want is to be “normal.”

So what might have happened if I hadn’t gotten sick? I’d probably be married with kids and a job, although not necessarily a job I liked, as there’s no way I would have discovered my new field if it hadn’t been for my health issues. I also might not be married to the right person– plenty of people, whether healthy or sick, end up in bad marriages and get divorced. What if I’d gotten sick years later, after having children, and my spouse left me? What if I’d had kids before knowing about all of my health problems, genetic issues, etc.? By the time I found out, it could have been too late. What if my pulmonary emboli and infarction happened when I was pregnant? There are so many “what ifs,” and most of them aren’t good.

I’m not always one of those “blessings in disguise” or “everything happens for a reason” types of people. A lot of the time, it breaks my heart to not be normal. Sometimes I just want to be like everyone else, even when I know that isn’t possible. But after all of this, I’ve started to think that maybe I’m just not meant to be like everyone else. Maybe someday in the future, I’ll look back on what I expected from my life and be so glad it didn’t turn out that way. I have to believe that good things are ahead for me, even if they aren’t necessarily the things I had expected they would be.

I hate social media.

A statement like that sounds pretty strange coming from someone who has been using social media since high school, starting with MySpace at age 16. (Since middle school, if you count LiveJournal, but I don’t.) I’ve never particularly loved it, but for years, I was at least able to tolerate it. Even after I first got sick, I still used it. Sure, I was going through a rough time, wasn’t able to work, and didn’t have much money, but half of my healthy Facebook friends were also struggling. Most of us were right out of college, and aside from the odd inappropriate “at least it isn’t cancer!” comments, most people could identify with at least some parts of my situation. I eventually became well enough to work, got my own apartment, and felt “normal” again, like I fit in. I continued using Facebook (I was long done with MySpace by then) and even started a Twitter account.

Then I got sick again. Really sick.

One of the first things I did was take a break from Facebook. I was devastated that I had landed right back in the same situation I was in after diagnosis, unable to work and fresh off a hospitalization and several ER visits. I didn’t want to explain it, so I left. That break from my personal Facebook account is at three years and counting. I didn’t take a break from Twitter, though; I turned most of my attention to the chronic illness community on there, making many new friends, asking for advice, and receiving support from some wonderful people. I was, and still am, incredibly grateful for that support.

One of the reasons I felt (and feel) comfortable on Twitter is because 99% of my followers don’t know me in real life. Another reason is that the majority of them have some sort of chronic illness, often more than one. This is not true of my Facebook friends; all of them know me in real life, many have known me for years, and a lot of them knew me before I got sick. Most of them are not sick. They do not understand, and it isn’t their fault. Chronic illness is impossible to explain unless you’ve been through it. I don’t want them to understand, because I never want it to happen to them.

I’m getting older, and so are my Facebook friends. Many of them are approaching 30 or are already there. They are moving on with their lives; getting engaged, married, pregnant. I am not doing any of those things. Most likely, I will never do any of those things. I am acutely aware of how far behind I am. I lost most of my twenties to chronic illness. Even now that I’m significantly less sick than I was for many of those years, I’m having a hard time catching up. I’m afraid that going back on Facebook would crush me. I’m also afraid I’d have to explain my absence in detail, or that I’d be expected to act like a typical twenty-something, which it’s been pretty well established that I am not. It barely seems worth trying.

Do I really hate social media, or do I just hate that I don’t measure up? I think it’s a combination of both. Even before my illness, I wasn’t thrilled with social media; I thought, and still think, that it encourages people to be far too self-absorbed for their own good. Facebook certainly wasn’t good for me, especially after I got sick. It’s one thing to share a moon face selfie with people who have also taken prednisone and have no idea what I looked like when I was healthy. It’s another thing entirely to post that selfie to be viewed by the people I knew growing up who don’t understand why my face is now so round.

I’m not planning on giving up social media entirely. I enjoy using Twitter, and I’ve made so many friends on there that I can’t imagine leaving all of them. As for Facebook, I struggle between the urge to delete it entirely and thinking that I should probably get back on there and reintroduce myself to the people who think I vanished into thin air. Which I kind of did. I really haven’t made a decision either way yet, but maybe 2018 will be the year I do.

I hate social media, but I suppose I can live with it. It’s living with myself, the way I am now, that’s the hardest part.

One of the hardest things about being chronically ill is the waiting. Waiting for a diagnosis, for test results, for the doctor to call you back… just an endless series of waiting. Patience has never been my strong suit, so I was probably not an ideal person to develop a chronic illness (but then again, who is?).

A couple of weeks ago, though, the waiting felt different. This time, it wasn’t related to my current health, but to my future well-being. When the phone rang this time, the news was all positive. I found out that I was selected for an internship that will allow me to pursue the field that I love. Not only that, but the internship I was chosen for seems like the perfect fit for me. It will allow me to gain experience with aspects of the field that I am very interested in. For someone who is so used to waiting for bad news, this was an absolute dream come true. I didn’t cry, but I sure came close.

It has been a long road to get here. Academic classes, volunteering, a practicum… and now, finally, an internship. I started down this road after a couple of hospitalizations (one that included surgery) when I knew I needed a new direction in life, and I thought this might be it. I took a class to see if I liked it and fell in love. And now I’m here, knowing that I am one internship and a certification exam away from entering the field I’ve longed to work in.

So now, I find myself waiting again. My internship doesn’t start until May, and if I could speed up the calendar a little bit, believe me, I would. Until then, I have things to work on… finding somewhere to live, filling out paperwork, and a few other things. While the waiting won’t be easy, it’s the good kind of waiting this time. I’m so glad to finally be moving forward in life, even if I have to wait a little while to get there.

I have to admit, updating my blog more regularly isn’t actually one of my New Year’s resolutions. Most years I don’t even make New Year’s resolutions, because it’s just not something I’m interested in. If I want to do something to make my life better, I’m not going to wait for some arbitrary date to start it. (And let’s be real: I can break a resolution in July just as well as I can break one in January!) This year I actually made one resolution, to work out at least five times a week, and so far I’ve stuck to it. However, I recently got a notice reminding me that my domain is set to automatically renew, and I figured I should probably use this thing once in awhile.

So what have I been up to since the last time I updated? A lot, actually. I’m a fairly secretive person, even on my own blog, so I’m not going to go into too much detail. I will say that I have taken some major steps toward a new career and am absolutely loving it. It’s been a long time since I felt like a contributing member of society, or, as I refer to it, a “real person.” Yes, I know that being ill and out of the public eye didn’t make me any less real, but it sure felt like it sometimes.

I have to admit, the past few months have been really hard for me, even with all of the good things. I’m starting to have that end of twenties crisis, compounded by the fact that due to my health issues, I’m pretty far behind most of the healthy people I know when it comes to careers, relationships, and children. Finding out that yet another person I grew up with is getting married or having kids feels like a kick to the chest. Yes, things seem to finally be looking up as far as career prospects go, but that still puts me pretty far behind where I’d like to be at this point in my life. I’m starting to wonder if marriage and kids will ever happen at all, and it’s emotionally crushing.

So that’s where I’m at right now. I’m not making any more official resolutions, but I will try to update this thing more regularly. Maybe once a month, maybe more often, most likely less often. We’ll see where 2018 takes me.

Empowerment is a word often heard in chronic illness communities. So is bravery. While these words take on different meanings in each community, there is a common one found in the community I spend most of my time in. What could be more brave and empowering than for a person with IBD and an ostomy to show off her scars? To “own it” and show that she isn’t embarrassed, or abnormal, or disgusting? To say “like it or not, here I am, I’m not ashamed?”

Well, I’m not ashamed. I am brave, strong, and confident. And I don’t want to show you my scars.

It’s not that I’m embarrassed. I willingly chose a permanent ostomy over a jpouch, knowing that I would be left with a visible appliance. I guess I could be defined as abnormal, but I don’t choose to define myself that way. I’m sure as hell not disgusting, or disgusted by my post-surgery self. Do I feel ugly sometimes? Sure, but my surgery has nothing to do with it. I look much better than I did when I was spending hours in the bathroom every day, I’ll tell you that.

So why don’t I want to show my scars to people? I don’t think it needs an explanation, other than to say that it’s just not something I’m interested in. One of the few positive things I’ve taken away from being chronically ill is that I’ve learned to say no and stopped giving in to things I’m not comfortable with. People can choose to show off their scars and bags and anything else they want to, and that’s fine. It’s also fine for me not to do it. It doesn’t mean I’m uncomfortable with my body, or that I hate or resent it. It means that the things that make me feel empowered may not be the same things that make you feel empowered.

Find what makes you feel brave and confident. It might be something that makes your invisible illness more visible to others. It might be something that only you can see. It can, and probably will, change over time. I feel empowered by writing and talking and sharing my experiences. That’s why I started this blog. That’s also why I’m sharing my feelings on this topic. I know I’m not the only one who feels this way, and I want you to know that however you choose to feel empowered is okay, even if it’s not what other people are doing.

I’m not ashamed of my body, or the way I choose to present it (or not present it.) I am still brave, confident, and all of those other words that come along with owning your battle. I just choose to keep some things inside.

“Just because you have a disease that may be similar to another doesn’t mean you understand what it’s like to have the other disease.”

I recently made this statement regarding an incident that occurs all too often in chronic illness communities. You’ve probably seen it before: person with disease X decides that person with similar (but not identical) disease Y is not nearly as sick as they are. Person with disease X then also decides that since her similar disease is so much worse, she gets to put down person with disease Y and make statements about person Y’s disease that implies she understands it. Which she doesn’t. Because…

You cannot understand what it’s like to have a disease that you don’t actually have.

I’m not talking about cardiologists understanding heart disease or rheumatologists understanding arthritis (although I would also argue that doctors generally don’t understand what it’s like to have the diseases their patients have, with some exceptions.) I’m talking about the patient experience, an individual experience that can never fully be compared to another person’s experience. Even two patients with the exact same illness are likely to have different experiences based on a variety of factors, such as the severity of their disease, access to proper medical care, and so on.

It makes little to no sense to start comparing diseases, yet it’s something I see in the IBD community all the time. I often wonder if this happens as frequently in other communities as it does here. It certainly isn’t appropriate or helpful, and doesn’t seem to have much purpose other than someone deciding they’re the Sickest of All Time™. I had the misfortune of attending an in-person support group that did this, and it’s pretty much turned me off of ever going to another one.

Let me be clear:

If you have Crohn’s disease, you do not understand what it is like to have ulcerative colitis. If you have ulcerative colitis, you do not understand what it’s like to have Crohn’s disease. It doesn’t matter that the same part of your digestive tract is affected, or that you had the exact same surgical procedure, or that you’re jealous because someone told you that people with the other disease are all better off than you are. You still do not know what it’s like.

If you also have ulcerative colitis, you still don’t know what it’s like to have MY experience with ulcerative colitis. You aren’t in my body. The same applies with any other disease. You can have a million similarities with the patient experience of another person being treated for the same disease that you have. It doesn’t mean you are that person.

It is very difficult to have any chronic illness. Putting down people with other diseases and their experiences is not going to cure you. Claiming to fully understand someone’s patient experience without having lived it will not make you any wiser. Your experience is only your own. Instead of claiming to know exactly what someone is going through, ask them what they’re going through. Instead of telling someone they can’t possibly be as sick as you, understand that you have no idea how sick anyone really is, especially a stranger on the internet. And above all, try to be kind. If you wouldn’t want to be on the other end of what you’re saying to someone, it’s probably best to not say it at all.