Tagged: invisible illness
Invisible illness week came to a close last night and I wanted to share my final thoughts: All last week I saw a lot of bloggers and others talking about whether they wish they had an invisible illness or a visible one, and I suppose there are advantages and disadvantages to both. People have been saying things like, “I really wish my illness was visible because then people would really know what I go through!” But do you really want something visible like scabies, shingles, psoriasis, elephantiasis, or herpes of the eye? No. You don’t. Well, I hope not anyway. Do you want to be in a wheelchair missing both of your legs just so people can SEE that you are suffering? Probably not.
But I get why people sometimes wish their illness was visible. You want validation. When you say you are in pain or suffering you want people to believe you without them looking at you and quickly seeing that you look fine and therefore coming to the conclusion that you must be faking or over-exaggerating. It’s not wrong to wish that you looked sick so that people would take you seriously. The thoughts have definitely crossed my mind. As soon as I gain weight, the side-effects of medication subside, and I am not in the hospital or in a major flare-up, people think I must be better. I assume it’s because they’ve never lived with a life-long illness themselves and can’t grasp the term chronic. I can’t tell you how many times I go back to work after being in the hospital or getting really sick and I hear “You look great, so glad you are feeling better!” or people ask me about a new medication I am on and they assume that it’s a fix-all for my disease. Because when I look better they assume I am better and sometimes I get angry and frustrated. It’s difficult when the outside doesn’t match what is going on on the inside. But then I ask myself, why do I care? What does it matter if people don’t understand that I can look okay on the outside (I mean c’mon! I’m pretty fine if I do say so myself. Kidding! Just kidding..) but I’m still walking around missing my entire large intestine and rectum and surviving! I still take these crazy medications to get by. I still have a disease that causes ulcers, inflammation, pain, strictures, fistulas, blockages, and all sorts of horrible things. And the only conclusion I can come to is that I want validation. I want people to know exactly what Crohn’s disease and ulcerative colitis can do to you because I am annoyed that no one understands. But then the other half of me knows that it shouldn’t matter and that most people are never going to get it, and that’s okay. It’s not important to them. Not even trying to sound mean there, but it’s just not as important to them as it is to me because it doesn’t affect them. And until it affects them or one of their family members it will probably never be anything they understand, and that’s okay.
Do I really want a visible illness? Nope. Perhaps it’s a blessing to have an invisible illness. No one needs to know you have an ostomy unless you lift up your shirt and show them. No one needs to know you’ve had tubes placed to drain a fistula or abscess or that you are bleeding internally because they can’t see those things. Though there have been times I have been visibly sick from this disease, most of the time no one would know. I’m glad that for the most part my disease is invisible. I’ve made it visible in my own life through this blog and the work that I do. It’s a personal decision to let people in, and I’ve chosen to make it visible in the healthiest way I know possible and that is to write my story, to proudly show my surgery scars, to wear my “Ask Me” shirt, and to record videos. This past week is about that. It’s about bringing invisible illnesses to light so that there is more understanding in the world.
These were your responses to the question “What has been the hardest part about living with an invisible illness (Crohn’s disease or ulcerative colitis)?” that I asked yesterday on my facebook page:
“Hardest part is I always feel as though I have to defend myself to others. People see me smile or having a good time and they think I’m fine and I’m over reacting or just faking my colitis. I find it the hardest with people at work!”
“I hate how people think that this disease is just a walk in the park. As I always say to others, “You will never fully understand until you experience it yourself.”
“When people ask me to come out or help them out with something and tell me you have to get out and they keep insisting. It’s like leave me alone, if I was feeling well I would come out and have a good time or help you move or whatever. I don’t enjoy staying home sick I have no choice so respect my wishes.”
“When you’re going through the process of being diagnosed you’re constantly having to go through tests that in the end it still takes so long to find out whats wrong with you and have someone treat you properly. You watch everyone else eat dairy or veggies….milk….and i love milk….and they are fine but I eat any of that or drink milk and I automatically get really sick and tired and its like i have to take a nap to feel better. i can never finish a meal, red meat hurts my stomach….sometimes i just joke saying i should just skip out on the meals and just drink ensure or something.”
“It’s tiring on a good day! Just goes to show how a common cold gets everyone else, yet we are still able to get on with life even though you feel as though you’re on deaths door!”
“Being told: Why are you so tired all the time? You look fine. Are you not in a good mood today?”
“How can you possibly be tired, you havent done anything today.” At least if you have a broken leg people see the cast…no one see’s a broken intestinal system and what it does to you.”
“My workplace is very supportive. However, it’s hard knowing that you’re going to run out of energy before you’ve achieved all you want in a day.”
“I hate the comments, “You look fine”, “Wow, you can eat whatever you want and still lose weight!”
“Because UC is so varying I find it hard to explain to people that I can be fine one day and knocked out the next, and trying to explain away the exhaustion is exhausting!”
“I look normal on the outside because all I want is to make myself feel just like everyone else. So I do my hair, put on my make-up, select a nice outfit. I smile and laugh at appropriate times and hold conversations when I feel like I could fall over. I do this because the alternative is to let everyone know just how I feel and that would make me seem like a constant complainer and who wants to be around that? So people see a put-together person who seems fine, but on the inside I am bleeding. I am missing a large part of my digestive system. I have portions of my intestine that are narrow and cause pain and make it difficult for food to move through because of scar tissue. I am on strong medications that come with their own battles. My body is at war with itself. I suffer mentally from anxiety, embarrassment, constant worry…it’s all exhausting. That is what people don’t see. That is the hardest part. I am fighting and no one is there to say “way to go!” because on the outside I seem fine.”
It’s Invisible Illness week and now that I am back home from the Get Your Guts in Gear bike ride (i’ll blog about that later) I am ready to focus my attention on II week. As I was browsing the internet last night on all things Invisible Illness one thing caught my eye - a video titled Who Am I Now? After Being Diagnosed. The title of the video alone struck me and I was already blogging away before I actually watched the video (which I am doing now, while writing this).
Who am I now?
Think about that for a second…
I know you have probably thought about it before. Maybe you think about it ALL.THE.TIME…your life has changed significantly since you were diagnosed with this disease hasn’t it? Do you often find yourself fantasizing about the person you used to be? Thinking about how able your body was, dreaming about a sport you used to play so well, or all the things you used to be able to do without thinking twice about it? Do you think about how your body used to work before a certain surgery you had, or what it used to look like? I know that I used to do this often, and still during tough times find myself thinking about who I used to be “before I got sick.” I spent time with a friend this past week who is a bit newer (newer? I made that word up) to being sick than I am. I have had more experience living this life and so maybe that puts me at a different stage in all this? That does not make me better or worse or mean that I have one-upped her in any way, but it made me realize that I have come a long way and that there is still room for improvement.
Here are my thoughts: Fantasizing about who you used to be isn’t healthy, though probably not always unavoidable. I admit it - I’m guilty. I think about the body I used to have and how capable it was. I miss the days that I danced, I think about how I used to go to school, work 2 jobs, and maintain a social life without thinking about it. When things get hard I get negative and wish that I could go back, or I watch my healthy friends and wish that I had their lives that they take so for granted.
There have been times that I’ve been flat out angry with life, my body, my disease…
Times where I have lost hope for a future that could be anything I wanted it to be.
Now I am able to recognize that those times come when my health is at it’s worst and I am fed up and frustrated and mentally it all becomes too much at times. Thankfully now, after so many years of being this sick, I have come to a point where I have mostly accepted who I am currently. And I know that things are always changing and that my health today is not going to be the same a month from now, or a year from now (it could be better OR worse) so I better learn to roll with the punches. I realized this as I chatted with my friend who is having a hard time coming to terms with life the way it is today. Like me, she is driven, hard working, and pushes herself. She doesn’t like to settle and maybe pushes herself too much (love you)? I listened to her talk to me about the life she used to have and I heard her question “is this my life now?” often. It’s not wrong, in fact, I think it’s completely normal to go through this. To mourn life the way it used to be, to dream of going back, to wonder what the future holds. Has our disease or illness taken away everything we wanted for our lives?
Here is my mission for you if you choose to accept it. Write about who you are now. For me it has certainly been a journey of coming to terms with what my life is now. I had to let go of some dreams I had and I had to learn to rethink the way I think. I am stubborn, and EXTREMELY driven, passionate, and maybe a leeeetle bit hard on myself. I don’t like to accept “failure” and used to have to be the best at everything. This past weekend during the GYGIG bike ride I realized how far I have come just by being able to say “I can’t” or “I need a break”. The old Sara would have beaten herself up for that. She would have thought that everyone must think she’s the biggest failure in life. She would have thought about how physically fit she used to be and what she used to be able to do and compared herself with that. Sure, she still feels bad, but she was able to recognize her new limitations and be mostly okay with them. Huge accomplishment.
Right now I can’t do some things I want to do…
In the future maybe I can?
Or maybe my health will never allow me to get to that point again.
I have to accept that because really I have no other choice than to accept it, do I? If I don’t life will be a lot harder. Some things are out of my control. Try as I might, I can’t control what medications will work or not work. I can’t control future surgeries and how they will affect me. I can’t control when ulcers and inflammation plague my insides, when I will be doubled over in pain from a blockage or scar tissue, or anything else that might happen. So I have learned for the most part to be a go-with-the-flow type of person. This is certainly not the type of person I used to be but as each year passes, and more and more happens, I realize that in the end it’s all okay. It’s okay because I am here, I don’t give up, and life is still filled with it’s good times. I have friends, I laugh, I have love in my life. In the end does it matter that I am a high school teacher, working in a salon, or doing something completely different? Does it matter what grades I got in school or how long I was able to ride my bike? I think not. I think in the end when I look back, all I want to be able to do is say I tried my best, I laughed, I smiled, and I have love in my life.
So write about who you are now. You can keep it to yourself or you can share it with me. Maybe I will share what you wrote with everyone here. It may seem a little cheesy or like you’re writing out positive affirmations but it helps. It helps to remind yourself that even though you are not doing the things you wish you were doing, that there is still so much you do. To give you some ideas - here is who I am now, after being diagnosed.
If you could pick one word or one phrase to represent the mark you want to leave on the world what would it be?
This was part of an exercise me and my co-counselor did for “Cabin Magic” this summer with our girls. I’ve been wanting to write about this ever since we did it, but because it was such an emotional experience for me (and them) I chose to soak it all in and reflect on it before I came back here to write about this. So first, I should explain what cabin magic is. Every night at camp after dinner we do a fun activity together with the whole camp or sometimes we divide the teens and younger kids up, but either way it’s a bigger group. But during cabin magic it’s an activity you get to do just with the people in your cabin, and the counselors get to plan it and surprise their campers. For the younger kids the counselors usually plan something really light-hearted like a movie night, or taking them out on the boat and letting them eat snacks, or doing a “princess party” for the little girls. For the teens we get to be more creative and the goal is usually to make them cry. That sounds mean right? I don’t mean we do something awful and make them cry, but rather we try to come up with something that will really challenge them, take them out of their comfort zones, or open up in ways they normally can’t out in the real world. We want them to feel safe and united as a cabin unit with us as their leaders.
I’ve never cried during a cabin magic before, I have shed a few tears, but never flat out bawled my eyes out like a baby until this year. Maybe it was because my emotions were already running high - I mentioned in a blog earlier that my co-counselor last summer had passed away over the fall and this was our first summer at camp without her. That is all I want to mention about that, but I felt I had to mention it so you can understand just where my mind was this year. It was focused on loss, friendship, relationships, being thankful, and so many other things during the week at camp that it was both emotionally draining but also freeing. For our cabin magic we walked them out into the woods and told them they were not allowed to talk but had to reflect on the week and our time together. As we walked I took my own time to reflect on the week and this is where I really soaked in camp. I breathed in it’s air so it’s scent will never leave me, I felt the sun on my shoulders, I took in all the beauty of the trees, the trails, the water. I thought about the week and what a great group of campers I had, and how much we had come together and grew personally. I thought about how lucky I am to get to come to camp and reflected on my own health journey. I thought about Katie and her energy being there…we walked…and walked…and I thought…and thought…until we arrived at a place in the woods near the creek.
This is when we put paint on one of their hands, gave them a marker, and told
them to go leave their mark on the world. Our campers were the oldest kids at camp and they are entering a part of their lives where they are going to become more independant and responsible for themselves and their actions, and we wanted them to start thinking about that and start thinking about how they want to impact others. Once we explained the exercise we let them find a landmark of their choice to leave their hand print on (their mark) and then write the word or phrase that represented what mark they wanted to leave. As I walked around and chose my landmark I started to think about words that could represent the mark I want to leave on the world. Different words circled my head (inspire, educate, empower, etc.) until I came up with connection. That was my word. To be honest, I thought a lot about you guys. You who read my blog and watch my videos. Though I hope to achieve a lot of things, like educating you and others about IBD, empowering you, inspiring you, or helping you accept your disease and feel confident in yourself, the thing that stuck with me most was the word connection. I want you to not feel alone. I want you to feel some sort of connection with me or with others here. I want everyone who comes in contact with me to feel a connection and from that connection I want them to go forward and do something better because I did inspire them, educate them, empower them, or whatever. That is the mark I want to leave on the world. This extends to other things in my life too. Whether it’s clients I come in contact with at work, friends I have, people I love, all my relationships - I want people to feel some sort of connection with me. Because once someone feels a connection then people are more likely to open up and real relationships are born.
This of course was not the part of cabin magic that made me cry. This was the part that challenged me to think. Once we had all left our mark on the world we came together and shared with each other what we chose and why. It was the next part of our exercise that made me cry. We had them stand in a line and again we put paint on one of their hands and told them to leave their mark (hand print) on the person next to them and then share with that person how they had impacted them. This was where the “magic” happened. I watched girls who hardly knew each other in the beginning of the week say such touching things to the person next to them, I watched girls who had been coming to camp for a long time and were friends for years share with each other how much they meant to one another…as each person took their turn to leave their mark on the person next to them I watched tears fall as they encouraged each other and pushed each other to be their best. There were tears all around as they talked about camp and who they are when they are at camp and how they feel, tears as they talked about the person next to them, tears about so many things that I will keep personal between me and my cabin. SUCCESS! But still, I was not crying. I was not crying until my co-counselor left her “mark” on me. I cried because she and I have been through so much together this past year and once she started talking about that and how she wouldn’t have wanted to go through it with anyone else I just lost it, and even though we don’t have to speak a lot about what happened we just “know”. As we left our hand prints on each other I thought not only about my friendship with her, but my friendship with all of the other counselors at Camp Oasis. I thought about the connection Blake and I have through Katie and mentioned how she had left her mark on us both. The word connection was so fitting here as well as I thought about my connections at camp. At camp we are all connected through our disease, we are connected through camp and what it means to us, and we are connected through the friendships we make with each other. I can’t really express why this cabin magic was so emotional for me without going into much detail and I want to keep that detail to myself because it’s personal. After all the tears and all the mess of paint being all over us we ended our cabin magic on a much happier note. We built a fire and ate some smores and spent time together as a cabin. It was by far my favorite cabin magic.
So tell me, what word or phrase represents the mark you want to leave on the world?
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Chronic disease and feelings of guilt/failure.
You guys, I’m angry.
If you know me, really know me, then you know that I hardly ever get angry. In fact, most of my friends are always hounding me about how I need to be meaner, stand up for myself, pretty much grow some balls. I may not be good at standing up for myself most times but when it comes down to the people I love, I have no problem standing up for them.
The reason I am angry has to do with my friend Amanda. This girl is incredibly intelligent, a brilliant writer, she’s beautiful on the inside and outside, and she is so giving of herself even when she needs so much. I can tell just from talking to her that she has so much passion and drive and that if she could, she would be out there showing the world what’s up.
But right now she can’t,
The frustrating part, and the reason I get so angry and personally involved/connected with what she is going through is that my health journey has a lot of similarities. You guys, people are telling her that it’s all in her head. They are telling her to just stop acting this way and go back to living her life.
Do you know how messed up it is to suffer and then have people tell you that you’re making it up? That screws a person up! I know from personal experience. Amanda, well, she reminds me a lot of myself. I’m a very driven, passionate, smart person too. And there was a time when my doctors were telling me it was all in my head, or suggesting I “talk to someone”, and then that I was drug seeking. My pain and suffering was terrible and when no one believed me…I don’t even know how to find the words to even begin to tell you how hard that was. What was worse was after hearing it for so long I would sit there and think to myself things like “maybe I am making it up?”.
I was there, laying in a hospital bed for months experiencing the worst pain I have ever felt in my entire life every second of every hour. I yearned for sleep just to escape the pain but sleep barely came because I was in so much pain that my body hardly allowed me to sleep. It got so bad that I just wanted to die just to end the pain. It’s a horrible thing to admit and I even get a little nervous writing those words out here on this blog for the world to see. I talked about it once on a video I did, but still, it’s a touchy topic for me. But truth is, I wanted out. People were telling me I was making it up and they were no longer taking me seriously and therefore stopped looking for answers. The worst part of all was not being taken seriously. Did they think I LIKED this? Do they think Amanda LIKES this? NO. I just wanted answers. I wanted a solution, a fix, ANYTHING, so that I could go back to living my life. I wanted to be out there being the driven girl that I used to be but I couldn’t do that until they fixed my pain.
It turned out that I just needed a new set of doctors. I was told “it was all in my head” for three years. My doctors (because they stopped taking me seriously) stopped looking hard for the answers. They got lazy. Until one day I had had enough and I went to a new hospital with new doctors and that is when I finally got my answers. But the damage done in those three years I am learning is permanent. I still have a hard time telling my new doctors what is going on with my health because I secretly wonder if they think I am a liar. I still have a hard time trusting them, and I have a hard time talking about my pain because I think they will think I am drug seeking when that is clearly not what I am doing.
I don’t even know how to describe how much it messes a person up to be told “it’s all in your head” when they are actually suffering. Like me, Amanda just wants answers. She wants to stop suffering and she wants to go back to living her life. Amanda (like my friend Marissa) has become a very good friend of mine. It’s so nice to have people to talk to who know exactly what a certain situation feels like. I just want to scream a big YES every time I talk to her because she gets it. I know that her and Marissa tell me that they are thankful for me because I have helped them, but truth is that the two of them also help me in huge ways too.
So today I am angry for my friend because what she is going through takes me back to my own struggles. I so badly want to fix this for her but I know that I can’t. Hopefully I do a good job at being an understanding friend and a listening ear. Girlfriend, don’t give up! You will find your answers, you know who you are, and you will get to the bottom of this.
(You can visit my friend Amanda’s blog at http://stopthinkingstartwriting.blogspot.com/ she’s pretty amazing!)
I thought I would start this out with pictures of my mom’s children. That’s me on the left, my brother in the middle, and my sister on the right. I guess my brother was the only one who was happy to start preschool?
Today I wanted to talk about the decision to have kids. I have refrained from talking about this because I clearly do not have any children of my own so I can’t offer any advice from that standpoint. Hell, I don’t even know if I want children. And even if I did want children, I’m at the age where it’s getting close to needing to have them asap. It’s not about whether or not I like kids (I do), or whether or not I would be a good mom (I would), but it comes down to whether or not I have my life in order - being married, a steady income, a nice home (I don’t). But what I do have is an opinion, and after hearing so many people talk about having a disease and whether or not they should have children I thought i’d weigh in.
This was a topic of conversation that came up with the teen girls at camp. Many mentioned how they were fearful of having children because they would feel so bad if their child got Crohn’s disease or ulcerative colitis. Some said that they didn’t even want to have kids because of it. It’s not just camp that I see this topic come up. All over the internet I see young women talking about how they would never have kids because they wouldn’t wish this on their worst enemy, or how guilty they feel because their child actually did get IBD.
Here are my thoughts: If you want to have kids, HAVE THEM. Seriously. I would never let my disease hold me back from having children if that is what I really wanted. I suppose you could look at that from a standpoint that I’m being selfish, but it isn’t that at all. The thing is, my mom has a lot of autoimmune diseases…my fate was pretty destined. What if she decided that she didn’t want to have kids because she is so ill?
Then I wouldn’t be here.
I like being here!
There isn’t a day that goes by that I blame my mom for the fact that I am sick. Okay, I admit that in the midst of my darkest times I may have yelled and blamed her in an angry fight and told her it was all her fault, and I still feel so terrible for that.
But do I really blame her?
Does she feel guilty because I am sick?
I watched tears fall from her face just last week as she asked me if I blamed her because I am sick. I know that my mom had kids because she wanted to bring us into this world and love us and do the best that she could. Never would she wish illness on any of her children. I find that I am often comforting her and making sure that she knows that none of this is her fault.
I like my life, even with all of it’s struggles. If I were ever to have kids it would be because of all of the love that I have to give them, I wouldn’t let my disease hold me back. Sure, I never want to see my hypothetical children suffer. I would hope that they didn’t have any kind of disease and it would probably break my heart when they scrape their knees or go through their first heart break. BUT, if they do end up with IBD then I can only hope that it has the same affect that it has had on me. In that it makes them a stronger person, a person who appreciates life, and a person who wants to change the world. I would be right there to help them through it, and I hope that my hypothetical children will look at me in the same way that I look at my mom. She is the strongest lady I know and through all of her suffering you hardly ever hear her complain. She works so hard, and she is so giving of herself. My mom is one of the nicest people that I know and she has a heart of gold.
So all I am saying here is that Crohn’s disease and ulcerative colitis sucks. We all agree. It would also suck to pass that disease to your children and see them suffer. I think we can all agree to that too. But should you not have children because of that? Not in my opinion. I am glad my mom chose to have kids. For me the decision to have kids comes down to a lot of other things, but disease (as terrible as it is) is not a factor in that decision.
A friend of mine is in a position that I used to be in. We will call it the “hiding phase”. The hiding phase is where you are still not able to talk about your disease and you do a lot of work to hide it from everyone. There is embarrassment involved, feeling ashamed, being isolated.
Have you been there?
My friend Marisa has certainly had a difficult journey just like most of us here and up until lately she has been doing it alone. She tells me she would watch my videos and that I was able to say all the things that she felt, and that it made her feel less alone. When I heard that I did a little happy dance inside and my heart melted because I realized that what I came here to do has been accomplished. I wanted to be a voice for everyone else out there who wasn’t able to use their own because I needed that at one time in my life.
My hiding phase lasted almost 13 years. That was 13 years that I lived in silence. I didn’t even seek out people on the internet because I didn’t even want to talk to them.
What did they know?
They didn’t have it as bad as me!
They couldn’t possibly understand what I was going through.
Plus talking to people on the internet would mean that I was ready to admit that I had a disease, and that was the last thing I wanted to do. I knew I had it, but I didn’t want to talk to other people about it.
Of course there are the apparent things that I tried to hide. Maybe that has something to do with the master of hair, fashion, and make-up that I have become? I remember for instance, the first time I ventured out with my ileostomy. I didn’t get to do that much because usually I was in the hospital, but the first time I went out in public with my ostomy everything, EVERYTHING, became about hiding it. I was at my University working a table for a club that I was VP of. It was end of August, so very hot and sunny. There were hundreds of people everywhere and I found myself hyper-aware of everything. Looking at everyone as they passed by to make sure their eyes were not directed at my abdomen. I can still tell you to this day (4 years later) what I was wearing, a black tank top and some jean shorts. I chose black because I thought maybe that would conceal my secret better. As I waited in a line to grab some food for me and my friends I couldn’t stop looking down at my tummy where the bag had expanded with air. I was SURE that everyone knew what was under there and I immediately felt ashamed.
I can play that entire day back in my mind and remember it as if I were watching a movie. Life had now become…different. I was different than everybody there. They could enjoy their days and live carefree. Not me, no way! I had to worry about this bag on my stomach. They were having fun and really living life and I was consumed with thoughts of hiding my bag.
Those first few days out of the hospital I took my first shower at home which consisted of changing my bag, and then normal getting ready stuff which ended with me spraying my favorite perfume on. To this day I can no longer use that scent because all I think about is being sick and having that ostomy. It’s true, a simple smell takes me right back to being underweight, weak, and sick. I spray it and I am remided of my time with my ostomy.
Concealing my ostomy wasn’t my first experience in hiding. That came when I was a teenage girl who saw blood in her stool over and over again but wouldn’t tell her mom because she was too embarrassed. So she kept that secret until she got so worried that she finally said something.
My sixteen year old self went out on a date with her boyfriend and found herself in dire need of a bathroom on the car ride home. No way in hell was I going to tell my boyfriend that I felt like I was going to crap my pants so he better speed. Nope. I just sat there trying to keep an even face while chanting over and over in my head “HURRY, C’MON HURRY, HURRYYYYY”. Meanwhile I’m sure my knuckles were white from gripping the seat at my sides and sweat was pouring down my forehead. Not only was that mortifying enough but then I had to use the bathroom at his parents house and suffer the embarrassment of his family hearing me. This quickly taught me to not go anywhere in case this happened again.
I have taught myself to make secret plans to excuse myself to where I can use a bathroom away from other people. I have failed an entire semester of school because I would skip classes to have my dorm bathroom to myself. I have walked down to the lobby of hotels or other buildings to “get something” just so I didn’t have to use the bathroom in my own room where other people were. I have isolated myself to a point where I didn’t go anywhere because of the way my disease was taking over. As a college girl who should have been out having fun I was keeping myself at home because I had to use enemas at night. I learned to conceal acne from steroids, I have hid strange eating habits, accidents, side-effects of medications, etc. Who wants to talk about these embarrassing things with people? Imagine someone asking me what my plans were that night and I responded with “Oh you know, going home to fill my butt up with an enema and then try to keep it in for 8 hours while I sleep.”
So we hide.
It means we are not yet able to talk about it. We feel embarrassed. We isolate ourselves.
We are alone.
That last sentence doesn’t have to be there. We don’t have to do it alone! As I have been talking to my new friend Marisa she has reminded me so much of myself when I was where she is at, and she is doing the same things that I found changed my whole life. Recently Marisa participated in Get Your Guts in Gear where she met my friend Megan who you guys may know from thegreatbowelmovement.org and from my trip to Chicago. Megan is a part of my support family and now she is a part of Marisa’s, and now Marisa is a part of mine. Pretty awesome right?!
There is no right or wrong throughout this journey and there is no time frame for where you should be. We are not handed an Idiots Guide to IBD when we get diagnosed to tell us what we should feel and think and how to navigate life with this disease. Most of you will probably never be as open as I am about your disease, and that’s okay. Some of you will learn to accept it, some of you will never accept it. My hope for you is that you build yourself a support system so that you don’t have to do this alone. I hope that you do come to an acceptance at some point.
We are all at different stages. Some of us newly diagnosed, some long timers. Some of us are open and some are still hiding. Marisa told me that I gave her a voice when she couldn’t talk and recently she was able to express what she was feeling and is ready to share that with people. She is slowly gaining her own voice and I feel privileged to be a part of that. I wanted to post her words here on my blog so that she has a space to share her feelings. That will be part 2 to this post that I will share with you later today.
Remember, accepting your disease is different than liking your disease. You don’t have to like it to accept it. But you have to accept it to live this life the best that you can with a disease.
Every time I see a commercial on the television or a story done on TV of a patient who has Crohn’s disease or ulcerative colitis I immediately get excited. My first thought is “yay, finally more awareness!” and then I quickly am embarrassed at how wrong they get it and then that embarrassment turns to anger.
Frankly, it’s insulting. It gives people watching who don’t have Crohn’s disease or ulcerative colitis the wrong idea of what our disease is or is like. Today I watched a report that appeared on the local news last night about a little girl who has ulcerative colitis. Except that when the reporter said what she had they called it “colitis disease”. WHAT? “Colitis disease?”, that’s a new one I have not heard before. That might be a little error to most people but I guess to me it’s a big deal. Because this is my life, it’s our lives, and to us we live with a disease that isn’t going away any time soon so it would be nice to just have a little understanding and awareness. If they were doing a report on a disease they had personally, I bet every little detail would be correct. It also made me wonder who is doing these reports and where are they getting their facts from? Yikes!
The report went on and I kept listening…they moved on to talk about what the disease is, except in my opinion they made it look like Colitis Disease (haha) isn’t a big deal at all. This was the only description given: “Colitis (for the love of unicorns please say ulcerative colitis) is like Crohn’s. Both are types of inflammatory bowel disease attacking different parts of the gastrointestinal tract. Symptoms include abdominal pain and persistend diarrhea.”
That’s it?! Is it just me or does that description just make IBD seem like it’s nothing more than a little tummy ache or maybe what you would experience from food poisioning? No wonder the world has IBS and IBD confused. If my symptoms were as simple as abdominal pain and diarrhea life would be a lot easier, but what they failed to get across is that the abdominal pain is the worst pain you will feel in your life. It will stop you in your tracks and make you fall to your knees. It feels like your insides are shredding up and on fire and that a bunch of baby kittens are scratching their claws down your intestinal walls. And what about the bleeding that IBD causes in your GI tract? Not even a mention of that. They wouldn’t even have to go into the gross details of how some of us crap nothing but a big red sea into the toilet and sometimes require blood transfusions to replace the loss of blood, and how physically tired that makes your body and how anemia becomes an issue. They could have just said ulcers in the GI tract cause the patient to lose blood. I would even be happy with that! No mention of surgery either. If you ask me, to get across to the public that IBD is a serious disease you should at least mention that a lot of us are faced with surgery to have parts of our digestive tract removed and how much that alters life. No mention of the large amounts of sometimes dangerous medications we take, no mention of side-effects, no mention of extraintestinal manifestations like joint pain, liver problems, skin and eye problems. Nothing was said on how disabling it can be and how not only does this disease affect you physically but in all other aspects of your life as well. Not a single word about hospitalizations or anything like that. Nope. Just abdominal pain and diarrhea. Well okay then…
What the report DID mention was that the little girl stopped eating some of her favorite foods and she’s doing much better. Which again gives people the idea that food is the cause of our disease and also the “cure”. People are mislead to believe it’s like celiac disease or irritable bowel syndrome because that is what they are being told.
I also find interesting that this report was done because of the upcoming Take Steps walk this weekend in my area. The story was trying to share the life of a little girl living with IBD and convince the public why it’s important to donate their money. But if I didn’t have Crohn’s disease and watched this on the television I wouldn’t donate any of my time or money because the story didn’t do anything to make me believe that this was a serious disease. They made it look like a tummy ache and a food problem. Ugh!
Now let’s talk commercials. I see them come on late at night (because why talk about IBD during the day when people are watching?) from big pharmaceutical companies that are just awful. If you live in the US I am sure you’ve seen the Humira commercial where they say “maybe the cause of your Crohn’s disease is underlying inflammation” or something like that. REALLY? WOW. Inflammation you say? I had no idea my INFLAMMATORY bowel disease had anything to do with inflammation. Thanks Humira for pointing that out.
(Oh wait! Here, I found it. http://www.youtube.com/watch?v=FohMzDp3NYc What if the underlying cause of your Crohn’s is damaging inflammation? bahahaha)
Anyway, I could go on and on about the terrible commercials and stories I have seen on television and in the paper about Crohn’s disease and ulcerative colitis. Not a person out there is confused at how serious cancer is. And let me just stress that I think people should know how serious and devestating cancer is because cancer is horrible. BUT it’s not the only horrible disease out there. We get to see on TV and commercials cancer patients who have lost their hair, who are in the hospital, who are terribly sick. But you don’t ever get to see IBD patients at their worst. People are misinformed to think that we just have chronic “flu-like” symptoms and therefore we are faced with unsympathetic co-workers and friends and family who don’t understand how awful we can actually suffer.
I guess I just feel so strongly about it because like I said, it’s my life. This is my every single day, living with a disease. And so many patients live in silence and are too afraid to talk. So I talk, and I won’t stop talking because we need awareness. I don’t want sympathy and pity from people, I want understanding. I want the people in my life to understand just how difficult and disabling this disease can be sometimes. I want them to understand how strong you have to be to go through this, and to be honest sometimes I just want a pat on the back and a “way to go!”
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Meet the Sara that existed 5 years ago. She was depressed, scared, alone, and not willing to talk…
Believe it or not I’ve been a blogger for a very long time. I used to write another blog about something else entirely and it was pretty popular about 11 years ago. I made some of my best internet friends back then (Hello Cass, Lauren, Tara), that I still talk to today! I ended up giving up that blog and moved on to just write a more personal blog about 5 years back. It wasn’t anything that was shared publically and I have long forgotten about it until today when I got an email about my account. I didn’t even realize my old blog existed because I thought I deleted it, so today I went to check and sure enough there it was. What I found interesting is that it was written during 2007-2009 when I was going through the majority of the really scary parts of my health journey. This was when my whole life changed.
Though I have been sick since I was a child and diagnosed very young, I never really understood what my disease was or how bad it could get up until it spiraled out of control. I want to share with you some of those entries because I think you’ll find that though I am a positive person today that things were really different back then. I went through all of the same feelings a lot of you are struggling with and I wanted to let you know that I’ve been there too. So here are some entries I wrote during that time with a few explanations…March 11, 2007
Sometimes I think I should be taking anxiety meds again. I know myself inside and out. I know what counts as a normal amount of anxiety and I know what counts as really abnormal. I just scare myself sometimes. I hate having anxiety but I don’t know how to make it go away. If I did, I would try to deal with it. I just feel hopeless some days, like I can’t get out of bed or do anything. This is something I’ve been dealing with since I was a kid. Depression, severe anxiety, other crap, blah blah yada yada. I just don’t know how long I can keep going and hang on. But tomorrow is a new day and perhaps I’ll feel better. I just wish I had someone to talk to who understood what depression is like, someone to relate with. I tell other people and they tell me to get over it, tomorrow is a new day, stop feeling sorry for yourself, just be happy….. Well… (This was written a few months before the bad flare-up started. Anxiety and depression has been something that has existed in me my whole life. The interesting thing is that I can deal with it a lot better now after going through what I did with my health.)
I have been getting asked to substitute teach a lot of classes recently. Actually I subbed all last week except Wednesday and I was back teaching today. I was in the 4th/5th grade class two days last week and then in one of the 1st/2nd grade classes two days. This week I had the 7th/8th grade class. (This was written 6 months before my horrible flare-up. My life was finally falling into place. I was living my dream teaching by just starting out in the field as a substitute teacher, I was almost done with school, life was good and then it all fell apart. That was hard to accept. I had never even thought I would be working in a salon today.)2/6/08I think i might be getting depressed…or something. (My health was awful at this point. 3 months into a flare-up from hell. Was avoiding getting much help because before this my flare-ups were easily controlled and not as severe so I kept expecting that if I kept taking my meds that it would go away any day now like it always had in the past. I also had no health insurance either so that sucked.)3/27/08So my intestines…they are no good right now and I fear for the worst. It’s been over a month I think where it’s been really bad, every single day. I’m afraid of the pain, and the bleeding, and the bloating. It’s gross, but basically when I go to the bathroom it’s nothing but blood. And my stomach kills all the time. I dunno, I’m scared i’ll die. I’ve been having to miss classes sometimes. I’ve been having to skip meals. I’ve been altering my whole life. (At this point it was horrible but I was still living on campus at school and trying to make it work. I was isolating myself because of the accidents I was having and fear of using the restroom. I was cancelling plans and pretty much really depressed and alone and so very sick. At this point I was on 40mg of prednisone a day and 12 asocol pills per day.)4/12/08I pretty much hate everything right now. (I think this says it all. I already had one trip to the ER where they just sent me home basically giving me the big f’you because I didn’t have insurance. Same meds but they added mesalamine enemas).5/5/08
Soooooo much going on. Tomorrow we are going on a picnic at the Ann Arbor Arboretum, I got a new phone, so now I don’t have a broken screen and I can see my text messages. :) Yesterday I went to breakfast with seven of my friends, it was good times. Then later that evening we had a bbq. The only issue I have right now is my health. Everyone keeps almost dragging me by the arm and trying to take me to the hospital. (I remember writing this actually. I was happy that I was able to get out and do something that weekend. This was written almost exactly 2 months before my 6 month hospital stay. I had quit school but still trying to work, and moved back home with my parents who were so scared for me. Everyone I knew kept trying to take me to the hospital but me being the stubborn person I am was avoiding it at all costs. I was in really really bad shape.)6/26/08I don’t like life as of right now, there are so many things i’m not happy with. This summer has been the worst summer ever. My job is about to end, probably sooner than I thought since i’m so sick. And so I have to find a way to pay bills. …Not gonna happen. I don’t even know. I don’t want to get into the rest. It’s just so much. (Written 10 days before the hospital. I lost my job just days after this was written and was pretty much bed ridden at this point. Medications not working, worst pain ever all the time, bloody bowel movements about 20+ times a day, couldn’t go anywhere without accidents or urgency, high fevers every night, arthritis flaring up terribly in my ankles, and losing weight rapidly. All I did was lay down in my room and run back and forth to the bathroom. My mom was so scared for my life.)8/6/08I never expected when I walked into the emergency room on July 6th for a swollen ankle and legs that hurt so bad that I couldn’t walk that I wouldn’t be leaving until nearly a month later without a large intestine. I seriously only thought i’d be there for a few hours, go home with a prescription, and continue to try and fight whatever was going on in my intestines. This past month has been so hard. I spent 22 days in the hospital and then 2 days later was readmitted and spent another 5 nights there. Over that time I had 3 blood transfusions, was pumped full of steroids, was fed through a PICC line for about two weeks, because I was being fed through that picc line it fucked with my sugar levels so I had to be poked every six hours like a diabetic and given insulin sometimes, had to get heparin shots every day to prevent blood clots, had vials of blood drawn every morning at 4am, spent a week on a pain pump, and then another week on a pain pump plus an epideral that failed, had a catheder after my surgery, learned that my blood pressure can get scary low, and my heart rate can get scary high, and that a normal person has a hemoglobin level of 12-15 and mine was at 6, plus my white blood cells were too high, was given pepcid through the IV to control stomach acid, and all sorts of good stuff like potassium, magnesium, and whatever else my body was lacking through the IV, not to mention the most intense and horrible pain after my surgery I’ve ever felt in my life. I got home at 90 pounds. I look like hell. My surgery was complex and I have another one in three months. I could go on and on about everything that happened in the hospital but it’s so much and so complex i’ll just say i’m glad to be out. I’m finally feeling a bit better. I hope that I continue to recover. I learned a lot about the people in my life during my stay. (I had my ostomy at this point and this was one of the first times I got out of the hospital but sadly right after I wrote this I was readmitted. I was there until December and got out a few times but would be readmitted a day or two later so that it was almost 6 months straight of being in the hospital.)10/23/08I’ ve made it out of the hospital for more than 2 days for the first time since the beginning of July, lets hope I stay out. I had a doctors appt. today and I lost weight and only weigh 96 pounds. I see him again in 4 weeks and he wants me 4 to 8 pounds heavier. Mom is taking me shopping tomorrow to get new clothes since i lost so much weight nothing fits now. I’ve had a pretty good week, despite the horrible pain i’m in. (As you can see I had not made it out of the hospital for more than 2 days since the beginning of July. After this was written I was readmitted again the day before Halloween and stayed there until December 23rd where I was finally discharged and remained out of the hospital for a year!)12/26/08Why do bad things happen to good people? I hope thats not selfish to say. But I feel like i’m always such a good person and I give give give to everyone. Why did I have to go through what I did this year? I hope that next year is better. I hope that my health will improve. I don’t want to spend any more time in the hospital. I hope i’m strong enough to do the things I need to do this year and not let my depression or whatever it is in my mind talk me out of it. I need to get loans, get back in school and actually do well, apply for disability, and so on. I need to find a direction in my life because I feel like i’m going nowhere. I’ve been unhappy for a very long time. My life isn’t how I want it to be. (I had just been out of the hospital for 3 days and this was when I had to start putting the pieces back together. I thought this one was important for you all to see to know that I have been in the same dark places you have been at one point in my life. I had no idea where my life was going or even if things would get better. I couldn’t understand why this had to happen to me and I was dealing with anger, depression, and anxiety all because of my disease.)Taken on Christmas 2008 just 2 days out of the hospital after six months. I’m the one wearing the white shirt. I was about 90 pounds here and my hair was so thin from falling out, I had chipped a tooth in the hospital because of the terrible ways IBD can affect teeth, and I was so pale. Those pants are size double zero and they were baggy on me so that I had to wear other pants underneath them to keep them up and because I was freezing cold all the time. My health continued to decline at first for about a month and I lost even more weight down to 82 pounds and then I started to get better.3/11/09Things are really looking up right now. I just got a job. I’m working full time at Brown & Deline Salon in Ann Arbor. I just got a call from Camp Oasis because I applied to volunteer to be a camp counselor there for a week in the summer. It’s for kids with Crohn’s and Colitis. I want to do this so bad. (I loved reading this! This was a time when my life took a turn. I ended up getting that job at Camp Oasis and I will be forever grateful because that is what changed my life and my outlook on everything. Meeting others with my disease gave me my voice and turned me into the person that I am today. And getting that job at the salon changed my life in so many good ways too.3/22/09My new tattoo. (there was a picture of it in the post) I’ve gained like almost 30 pounds since mid January. I mean, I was an unhealthy 84 pounds, but now i’m a fatty 110. And by fatty 110 I don’t mean that 110 is overweight, so don’t jump down my throat. I mean that I got so excited about eating food that I started eating everything, all my favorite foods, which are horrible for you, and put all the weight on in fat. So it just looks gross. (This was the last entry in that journal I wrote anything about my health and one of the last entries all together. It’s good to see that I was a normal weight, had a new tattoo, and I was eating everything in sight! haha.)Alright you guys, I hope you enjoyed getting to know me a few years ago. I enjoyed looking back on my progress and thinking about everything that has happened since then. I had many more hospitalizations since, take new medications, will be spending my 4th summer at Camp Oasis next month, and even though my future is uncertain I know that I have a lot more support, experience, and knowledge to help me through it. BAM!-Sara
Hey hey guys and dolls!
I’ve got some inspiring stories lined up just waiting to inspire you to be more confident about your disease, your scars, and your ostomies. First, right here and now, I am going to share with you my interview with WEGO Health and also share with you a picture that I’m a little afraid to post (don’t be disappointed in me Grandma! The human body is a beautiful thing). I also have a great story from a friend who ran in a race naked with his ostomy! You know you want to hear about that and I will tell you about it soon.
Up first: Remember when I entered that “Myth Mugshot” competition that WEGO Health was doing? Well I won and I owe that to all of you who took the time to vote for my picture. So thank you very much to all of you who voted. I am blessed to have such a great community of people who support me and I was overwhelmed at all the support. Although I may have harassed some of you to do it. ;p
So this was the winning photo. The object of the contest was to take a “myth mugshot” of you holding a sign and busting a myth. As you know, I do a lot of work in self-esteem and trying to inspire you guys to feel confident in yourselves as I know that this disease can surely rob you of that sometimes. So naturally I went in the direction of scars when thinking of what I wanted my sign to say.
But before I chose the first photo as the one I entered for the contest I took LOTS of pictures. No seriously, I took a bunch. I wanted the picture to represent ‘me’ and what I stand for, so I dressed myself all up and wanted to portray the image of a girl who looked confident and attractive but who had scars. To show that you can still be beautiful and have scars/a disease, duh!
(click read more below for the rest)
Yeah, that is me. And yes, that is ugly. But this isn’t the kind of ugly i’m talking about because I am talking about how my disease made ugly on the inside. Though both that and the picture above occurred at the same time.
You see, i’m not talking about how during this time I was pulling fist-fulls of hair out of my head every day so that my hair was thin and scragly. I’m not talking about the affects that months of high doses of steroids had on my skin. I’m not talking about how I hadn’t showered in weeks because I was too sick or in too much pain, or the fresh surgery scar down my abdomen, or my very underweight body. Sure, all of those things made me physically “ugly” but what was worse was I became an ugly person inside - where it counts.
This was the first time I had ever been this sick and so I had the fear of the unknown pumping through me. I was having accidents every night and so I was afraid that it would never stop and that I would keep crapping the bed for the rest of my life, which of course came with it’s own set of fears like what would that do to my relationships?, how would I ever sleep next to someone?, I have to be alone forever, etc. I was so weak and underweight that I had to have someone help me do EVERYTHING. I needed help to walk to the bathroom, to dress and undress, to clean up my vomit and feces (dude, it happens), and so I was scared that I would never have independence again. I was having complication after complication and when I was assured that things would get better they got worse. Then there was the pain…oh dear heavens it was like the Dark Lord Voldemort himself used the crucio curse on me. Seconds seemed like minutes and minutes seemed like hours and all I could do was watch the clock in my hospital room until the next time I could have pain meds because all I yearned for was a moment of relief.
The pain, the uncertaintly, the fear turned me into an ugly person.
I was angry.
Angry that I am a good person and I became sick. Why me?
Angry that my friends were out living their lives and finishing up school and I wasn’t.
Angry that this was all happening and I didn’t have health insurance and so my credit was screwed at such a young age for something that wasn’t my fault. Not like I wanted a disease.
Angry that I couldn’t do anything for myself. That people had to help me. That I might not ever get better…it went on and on.
Besides being angry I was scared, sad, and depressed. So what did I do? I took it out on the people who loved me most. I couldn’t look at them or talk to them because I was mad about my life. When I did talk, well…I didn’t talk. I yelled. I treated everyone like crap when they were only trying to help me. If someone tried to push me in a wheelchair I would scream at them and tell them they were doing it wrong. Same goes for if anyone tried to help me with anything else. The hardest part of all of this was I could see the hurt that I was causing them. I saw the sadness in my mothers eyes as she feared for my life and watched me get sicker and sicker. All she wanted to do was help and all I could do was yell. Eventually she told me one day that she was not going to visit me at the hospital anymore because I was so nasty and she couldn’t take it any longer. A few days went by where she didn’t call me or come to visit and though I didn’t think it was possible, I felt even more lonely. I also felt terrible and eventually called her to apologize and then had to work out how to deal with my feelings in a better way.
See. My disease made me an ugly person because I was angry and afraid. I never thought that time in my life was going to end. Now that years have gone by and I have had many many more hospitalizations I don’t get as scared. I know that it can get pretty bad but more than likely it will get good again. Don’t get me wrong, it’s still difficult. Every time I get sick it is difficult and I end up crying over the most mediocre things. Like last summer I cried because I had a blood draw come back weird and they were afraid I had an infection in my PICC line and were going to pull it out. I cried because I didn’t want to lose my PICC line because IV’s are such a problem for me. Luckily they just drew my blood again and it came back fine but that’s just an example of how after spending weeks and weeks in the hospital that your whole personality changes and little things become big things.
I am very careful now to not become an ugly person. I do my best to not take my feelings out on those who just want to be there.
*Disclaimer: If you like what I have to say and want to reblog this or use any content feel free to do so as long as it is cited properly and has a link back to this blog. :)
Sometimes all it takes is just getting out of the house.
As you know I reported to you guys that I wasn’t feeling well both physically or mentally. The physical part I can handle a lot better. I am used to pain and suffering and have accepted that at times that will just be a part of my life. But one thing that I can’t handle so well are the psychological areas - I was so so lonely sitting in my house day after day in my pajamas, not washing my hair, and not really doing anything. The only time I got ready was when I made a video blog because for one, I haven’t been feeling well, and two, I had no other reason to get ready so why should I? I knew that the sun was shining outside and I wanted so badly to be outdoors, I wanted to be working at my job, or spending time with friends. I just wanted to do SOMETHING but my health and lack of money were preventing that from happening. It’s hard to watch the people in your life out there living their lives and being “normal people” when you are stuck inside and you can’t even remember what day it is anymore.
Don’t get me wrong, I love you beautiful bad gut people so so much I just want to squeeze all of your cheeks (on your face), but sometimes I need to get out into the real world to remind myself that I am more than just the Sara who has Crohn’s disease. All it took was simply seeing some friends yesterday. I woke up feeling pretty decent (yay!) and decided I would meet 2 of my best friends for breakfast. You would think that that would inspire me to do my hair and make-up but…nope. My pal Nadia (I call her “nads” and you can too!) pulled into my driveway and I walked out of my house with my hair all over the place, no make-up, and best of all I had jean shorts on and a sports bra. I was rushing so I put my shirt on in her car.
Later on however was another one of our friends Birthday parties which got me super excited to dress up and go out. Woo-hoo I get to see people! We only stayed a short time but during the time we were there I got to enjoy my favorite drink (a glass of pinot noir) and socialize. I looked pretty good too if I do say so myself. My shoes were FIERCE.
And see? I’m in such a better mood now. Back to no pants blogging today with messy hair and no make-up but I am in a much better mood. Also, every time I drink wine I savor the hell out of it because if I start doing my methotrexate injections again I have to kiss it goodbye.
I have to say that i’m super excited to announce the launch of my new YouTube channel, Sick Girl Beauty Vlog!
You’ll find lots of great stuff there about being a girl and living with a chronic illness. You can check out the YouTube channel here: http://www.youtube.com/user/SickGirlBeautyVlog and “like” the facebook page here: https://www.facebook.com/SickGirlBeautyVlog.