“Seriously. Why are you acting like this? What’s wrong with you?”
“You shouldn’t be behaving like this at your age.”
Sound familiar? If you’re a young person who was showing symptoms of a chronic illness several years before actually being diagnosed, it probably does.
For several years leading up to my diagnosis, I was exhibiting a lot of strange and confusing symptoms. I tried my best to cover them up because my mind was telling me that they were “my normal.” Nevertheless…when blood showed up in the toilet bowl and I couldn’t hide it, there was a bit of ridicule to follow, combined with some anger, claims of “being unhygienic,” etc.
I have memories people telling me something was “seriously wrong” with me.
Well – they weren’t wrong. At age 18 I was officially diagnosed with severe Crohn’s disease. That explained a lot of those behaviors and symptoms. I waited for an apology. It never came.
At first, this made me sad and angry. Several years of teasing, laughing, and casual claims that something was wrong with me ended up in me getting the lifelong sentence of a serious chronic illness. I bottled up a lot of this anger and hurt. I told myself I deserved an apology. I still believe I do.
However, I’ve come to realize that harboring these grudges against people I know care very deeply for me is useless. Will I ever get the apology I truly want? Probably not. But I also see apologies in my family’s everyday behavior. Whether it’s coming to every doctor appointment and procedure, going out to get the only food that doesn’t make me nauseous on a certain day, or coming over to spend some time with me, I can see that they regret a lot of their remarks.
The remarks will never leave my mind. Chronically ill people constantly harbor the fear that they are a burden, that they’re disgusting, that they don’t deserve the love and support of people around them. These are intrusive thoughts that I’m actively trying to push out of my mind. It might take a while, but what difficult thing takes two minutes?
I won’t ever forget the things said to me by the people I love and trust most, but I now remind myself that they didn’t know I was seriously ill – nobody did. Was something seriously wrong with me? Yes. Was I teased about some of my symptoms? Yes. Can I go back in time to change it? No. And so, I’m trying to move forwards. I will never receive the apology I want because it’s one that I’ve constructed in the most complex of manners in my mind. It’s the apology I want, perhaps an apology I deserve, At the end of the day, me moving forwards, silently forgiving people who just didn’t know that I was suffering, and trying to live a happy, positive life, rather than dwelling on sour memories will serve me better in the short and long-term.
Instead of dwelling on old events, I can work on becoming less bitter, more loving, and more forgiving. I think that’s a better goal than trying to squeeze an apology out of someone that, no matter what it contains, will never be enough.
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Being someone with a chronic illness in any case is hard, especially being in public and having people stare, make comments, or ask you the same questions you always get. For me, I get “What’s that tube going down your nose?” or “How do you have cancer, and all your hair?” Many chronically ill people face these questions. However, they are still open about their illness, and walk with pride. Such as me being a tubie. Many of us see our illnesses as something to be proud of and something we are conquering. It makes us special and unique. However, in a public high school setting, walking around with this confidence in being ill was seen as me being “an attention whore.”
I have had a glioblastoma (brain cancer), and I also have Crohn’s disease and other chronic illnesses. However, my cancer and Crohn’s are the ones people can physically see the most. So when I came to school with my NG tube in, or a whole lot of medications for my brain cancer, people think I am being an “attention whore.” I walk around with pride like other people with chronic illnesses. However, I feel shamed for walking around with pride. People think I must bring a NG tube with me to school because I want attention. This stigma has been bothering me. Yes, I am open about my illnesses; however I am not an “attention whore” because I am open about my illness.
Recently my Crohn’s has been bad, and I had to start using my NG tube more frequently. The other day, I went to school, even though I was not feeling too well. In my science class, we work in groups, which for many chronically ill teens can sound like a nightmare. We had just finished taking a group test and I was feeling like I was going to throw up. So I told my group members calmly, “I feel like I’m going to throw up, so I’m going to go to the bathroom,” to let them know where I was going. However, when I came back to the classroom they asked if I was all right and I told them I threw up blood. A student in the other group at the lab table behind us called me an “attention whore” because I openly told my group I was throwing up blood, and that I was feeling sick before I left.
This stigma of people who are open to others about their chronic illnesses needs to end. Chronically ill patents should be allowed to walk around with confidence, and be open about our illnesses without receiving slander for doing so. By me and other patients being open about our illnesses, we are helping to educate people around us as well. If the student in my class reacted maturely he would have seen that with Crohn’s disease you can throw up blood, and the assortment of reasons for this possibly occurring.
However, if I will be classified as the “attention whore” because I am open about my chronic illnesses, then I will gladly receive that title. I will always be open about my illnesses, and will never try to hide them. No chronically ill patient should ever have to hide their illness — I think we should be open about them, to help educate the people around us, without persecution because we are informing and helping educate people, in a way not everyone can do. I will always be open about my chronic illness no matter what. I will carry my bags of medication with me and have my feeding tubes in while out in public because I am proud and confident of my chronic illnesses. If I must be, then I will be an “attention whore” because I refuse to not be open, and help educate the society around people who have chronic illnesses.
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Editor’s note: Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional.
It took me three years to accept the fact that my Crohn’s disease was never going to go away. In that three years I did a lot of things, both medical and holistic in the hopes that some Band-Aid would stick and my body would heal itself. For three years my quality of life kept declining as time went on and as my GI put it: “Since I’ve started seeing you as a patient, I’ve seen you terrible and better, but never great.”
On the eve of my 23rd birthday, I smoked weed for the first time. I grew up in a drug-free household where my parents were candid about the actual fears they had about me doing drugs (mostly surrounding where I was planning on getting them and if they were safe, and a criminal record that would follow me around). Rather than using fear tactics, they just told me the truth and I respected them enough to listen. Also, I was broke as hell in high school anyway and too busy with grades, activism and life to bother.
However, after recreational marijuana became legal in Oregon, and after having Crohn’s, generalized anxiety disorder and unknown to me at the time, fibromyalgia for over three years, I decided to give it a try.
First of all, I was embarrassed. I had never smoked anything in my entire life, and I had no idea what the hell I was doing. Eventually, with some coaching from my husband, I figured out how to do it.
Relief was immediate. It worked faster than any pain relief method I was use to — I’m talking 15 minutes and I was golden. I wasn’t anxious, I wasn’t in pain, I was hungry for the first time in days, and I was able to get to sleep at a reasonable time for the first time in three months.
I cried. I honestly cried from the relief.
After that, I poured myself into the research, looking for a scientific reason it had worked as well as it had. There were lots of studies that indicate cannabis as an anti-inflammatory agent — which made me curious about different effects caused by different strains.
I will be purchasing books later this year and dedicating some time to some real reading on the subject. I’ve explored websites like Leafly and that helped me immensely while I was getting started. I was able to pinpoint exactly what I thought I needed with their comprehensive format. Then, I spent a few afternoons watching some documentaries, listening to some people talk to just get use to the idea that this was my new normal: that cannabis is a medicine and that there was nothing wrong with that.
And there was the shame, the social stigma creeping up into my brain to breed doubt. I don’t escape it, and neither does anyone else with Crohn’s or anything that causes chronic pain. When we look for pain relief, we’re often treated badly by doctors, therapists and medical professionals who accuse us of just looking to get high or for Band-Aid solutions. Even now, when I ask about it in groups, I’m often met with a group of very enthusiastic outsiders, and a lot of people pushing products that are heavy in CBD and don’t contain any THC — which is fine, if that works for you. However, THC lifts my mood, encourages my appetite, is partially responsible for some of my pain relief and quells my anxiety. Why is there so much shame surrounding THC when oftentimes, people won’t flinch when they tell you they can go through an entire half-bottle to a bottle of white wine or vodka by themselves in order to fall asleep? (everyone’s bodies vary but many people with IBDs shouldn’t have alcohol or caffeine — these were the two things I had to give up first).
The day I smoked weed for the first time? I walked down two flights of stairs without help. I laughed. I played with our landlord’s kids outside, just tossing a ball back and forth and drawing with some chalk in our shared driveway.
Other times, I laid and listen to music with my husband. We walked to the store and got snacks and sat outside, enjoying the fading sunshine together. I watched arguably my new favorite movie on Netflix and only had to go to the bathroom once. Some days I smoke weed and clean my whole house, organize my life, make my husband dinner and then relax and others I couch lock and play video games, like a normal 20-something-year-old.
All without the mind-numbing, debilitating pain.
I can still feel the pain sometimes present in my body, but when I use cannabis, it’s far away and much more manageable. However, I can feel the pain and fatigue when it gets too bad, and I can tell when it’s time to go in for some medical intervention. Cannabis has yet to put me in a dangerous situation other than maybe a couple of awkward social interactions, which knowing me would have happened anyway.
Cannabis isn’t a miracle cure. It’s not going to work for everyone. I still have Crohn’s disease and I still suffer from symptoms, but I can manage my symptoms: the pain, the nausea, the vomiting, the fatigue, the cramps, the shaking, the muscle spasms, the depression and anxiety, the lack of appetite, on and on.
No, it’s not a miracle. My quality of life is still not where I need it to be. I still have Crohn’s, but I’m starting to live with it now, and that’s enough for me.
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“The cave you fear to enter holds the treasure that you seek.” – Joseph Campbell
Experiencing pain and loss is part of every human’s experience, but too often we skip over the feelings that come with it. Experiencing those feelings is a way to understand what we have gone through and to learn and grow from it. It is a pathway into the deepest part of ourselves. If we skip over those feelings, we relinquish a critical opportunity to create positive change in our lives.
The painting above is called In the Cave. I’ve had recurring visions of cave scenes for much of my life. I view a cave as a “container” which causes fear and provides protection. On the one hand, there is the fear of collapse, as well as one of the hidden terrors lurking in the dark. But there is also a sense of safety from various threats and invasions, both physical and emotional, that comes from the insulation that a cave can offer from the outside world. Since you are often alone in a cave, you need not worry about causing upset or judgment in others when you express your feelings. I imagine we all feel that need at some point. Having been ill as a child, and having, at times, a tenuous hold on life, I often felt the eyes of those around me were fixated, looking for the slightest indication of which way I was headed. I noticed that the slightest reaction might evoke an intense response from those around me. This feeling became very uncomfortable to live with.
A purple giant releases a primal scream in his cave. It is the only place where he can express himself without having to respond to others’ reactions. He needs to express himself because he knows that if he doesn’t, it will kill him. The energy he has released through this expression gathers at the top of the cave. It is a brew of molten, lava-like energy that vacillates between receiving the expression and transmitting protection. In this scene, the angel protects his more fragile parts, his inner child. His expression fuels the protection. Together, they are a more powerful force, moving towards integration.
There are ways in which my illness has been a blessing. Right now, as I am writing this, I am lying in bed because I feel so exhausted. I am nauseous and every cell in my body is oscillating to a shaky, staccato beat I can’t quite catch up to. This feeling is not fun and is, in fact, sometimes downright depressing. When I am able to let go of my judgment and be present with the feelings, it creates an opening into a deeper part of me. If I can isolate myself from the noise of the world – much of it requests and demands I can’t possibly meet in my current condition – I can enter that opening and access a level of connection to myself that can bring great peace. This is not an easy task to achieve; it takes both training and practice. It takes courage and commitment. You must be willing to face the darkest and most painful parts of yourself. It can be a long and arduous process, but it is work worth doing because it expands the terrain of our heart and our ability to feel and experience emotional connections to other human beings.
I move in and out of this process. I must dole out the time spent in the darkness often across days, months and decades so that it does not become overwhelming. That’s why my mind stored it away in the first place and I need to respect its wisdom. It’s astonishing how well bodies and minds can recover from severe trauma when they are given the space and support to do so. To whatever extent possible, we must give this to ourselves and those around us.
When I do go into the darkness, I need to constantly monitor myself to make sure I can find my way back; that is, when I must let go and simply rest, or get up and tackle some task which feels, at least on this day, like it will require a Herculean effort.
It is a deeply felt life which is not the same as an easy life – far from it in many ways. But it is a richer life and, regardless of any of that, it is the only life that would allow me to, as the great Mahalia Jackson sang, “leave this old world with a satisfied mind.”
The reason I write about this kind of stuff is that I feel if everybody honored both their own as well as each other’s feelings, the world and its inhabitants would be more peaceful within and without. We would have the ability to think more clearly, address important issues in a serious fashion, and work together to solve problems in a way that would benefit everyone. Life is not a contest; it is difficult for everyone. Just about everybody has lost someone they have loved and has struggled to make sense of why we must experience such enormous pain. We are all here for a very limited time. Too many people don’t treat life like the precious jewel it is.
We had been sitting in the waiting room at children’s hospital with other anxious parents for what seemed like days. It had really only been about an hour or so. Then, we finally saw our name on the board, indicating that our son’s procedure was complete and we could go meet the doctor.
From that moment, everything became fuzzy and time seemed to be stop. To be honest, I have a hard time remembering the details. All I recall is being told Caleb had come through the procedure fine but that he had Crohn’s disease. I knew it was a chronic illness but didn’t know much about it at that time. He was in recovery, and we could go in and see him.
It took a couple of days for the news to actually sink in. It took a couple more of intense research to fully comprehend the magnitude of what my son would face the rest of his life.
For the 10 years prior, I had woken up every day with the goal of doing everything in my power to keep my son safe, to keep him healthy, and ensure he was happy and secure. Now, in a matter of a flash, it was all gone. An autoimmune illness had taken over and control.
What do you do after your child is diagnosed with Crohn’s disease?
I did what any type-A, driven, controlling, protective mother would do. I learned everything I could about inflammatory bowel disease (IBD). What caused them? Why? What were common treatments? What were the side effects? I joined online supports groups, read books and talked to other parents.
We had a follow up meeting with our gastroenterologist (GI) specialist a week later. Based on the colonoscopy and Caleb’s blood results, he was advising drug therapy to reduce the inflammation in his body. I had already read about the variety of anti-inflammatory drugs and knew their side effects and immune suppressing implications.
I decided to pursue a different approach – one that aligned more closely with my natural and holistic instincts. This involved managing his disease primarily through diet. My GI Specialist was on board, so long as we monitored Caleb’s blood work carefully. We decided to take out all dairy from Caleb’s diet, along with most gluten. We already ate a pretty clean diet, but going forward there would be no more fried food, sodas, etc. I also planned a trip to New York to visit a Chinese doctor who specialized in chronic illness (who I had used for my daughter’s Lyme disease). I started Caleb on Chinese herbs to help reduce the inflammation in his body and help increase his digestion.
The next month, we did blood work and Caleb’s inflammation levels had dropped all the way down. They weren’t quite at normal levels, but we were pretty excited.
They remained that way for almost two years.
Then, as any chronic disease can and will, it reared its ugly head.
Caleb’s inflammation levels started to rise. The doctor was alarmed, as was I. He told me about an elimination diet that was having great results with IBD patients. Due to its highly restrictive nature, it was very difficult to follow, especially for kids, The diet, called The Specific Carbohydrate Diet (SCD), eliminated all grains, gluten, complex carbohydrates (rice, corn, potatoes), sugar, dairy and preservatives. Basically, it cut out all foods that kids traditionally eat. If you’re familiar with the Paleo diet, it’s very similar.
Complex carbohydrates, that are not easily digested, feed harmful bacteria in the intestines, causing them to overgrow and inflame the intestine wall. The diet works by starving out these bacteria and restoring the balance of bacteria in the gut. This reduces inflammation in the body and is why the diet is so helpful for anyone who struggles with inflammation or digestive issues.
I felt we had no choice, so we jumped in. Caleb agreed as well.
Before I even got home, I had purchased Elaine Gottschall’s book, “Breaking the Viscous Cycle,” which tells the story of another mother, just like me, struggling to help her child with a debilitating case of ulcerative colitis.
After failed attempts with drug therapy, Elaine (the mom) faced surgery to remove her daughter’s colon. After desperate inquiries with specialist after specialist, Elaine had been given the name of 92 year old Dr. Sidney V. Haas, MD, in New York City. Dr. Haas had developed a nutritional approach to intestinal healing. He put her daughter on a special diet and within weeks, Judy’s neurological problems had diminished and her intestinal problems improved. She also started growing again, and within two years, she was symptom free. By this time, Dr. Haas had passed away and Elaine felt she had an obligation to carry on his legacy. This is how the SCD Diet came to be.
When we arrived home, we emptied the house of everything that had sugar, gluten, grains and preservatives. It didn’t leave much. I decided to go on the diet with Caleb, so that I could support him and he knew we were in this together.
The first couple of weeks on the diet were hard. They were hard on Caleb and me. I was desperately trying to find recipes to cook and bake for him and he was just hungry all of the time. Luckily, there is a very strong online community of other parents on the SCD Diet who provided great support during this difficult time, and they continue to do so.
We finally fell into a rhythm. We found great recipes for cookies, cakes, bread, crackers, marshmallows and more. I started making homemade yogurt and bone broth to help with the healing process, which is an integral part of the diet. It felt good to feed my son such whole, healthy foods that I knew were healing him.
Four weeks later, we went back to have our first appointment since Caleb’s inflammation levels had risen and since we started the diet. I was holding my breath, not sure what the results would be. Unbelievably, Caleb’s c-reactive protein (one of the markers which measures inflammation in his body) had fallen from 19.2 to 6.5.
We were ecstatic and relieved. The diet was working. I remember sobbing when I got the results. I felt like I had been holding my breath for months and now I could finally let it go.
There was hope.
We plowed along for some time, cooking, baking and cooking some more. There is very little to buy in stores today that doesn’t have sugar, gluten or some preservative in it. There’s plenty of great gluten free food – but it’s all filled with sugar and preservatives. So, we have to cook almost everything our kids eat.
Caleb was doing really well physically on the diet, but socially and psychologically, he was struggling. Between school bake sales, birthday parties, sleepovers and more, he was having a hard time navigating a world filled with junk food. He kept saying, he just wanted to be like a “regular kid again.”
Every day, I was in Facebook IBD support groups talking to other parents whose children were sick. Some were using drug therapy and didn’t know about the SCD Diet. Others were on the SCD Diet, but were having a hard time finding recipes and making all of the food. There was hardship everywhere I turned.
I decided then that I wanted and needed to do something about it. I wasn’t quite sure yet what it was. It took some time to come into focus. I saw Caleb struggling, feeling like a social outcast, and knew there were hundreds of thousands of other kids just like him. I saw exhausted parents, weary to the bone from all of the cooking, and I knew there must be a way to help.
Then, it came to me.
I would create a company to make healthy fast food that any child on a special diet could eat. It would all be grain, gluten, sugar, dairy and preservative free. It would be typical kids food that I know Caleb would want to hang out with his buddies and eat. It would look and taste just like kid’s fast food. It would also be marketed and branded that way – with big bold colors. In fact, I ended up creating a “marvel-esq” cartoon character of Caleb as the logo. I would sell it frozen, so there would be no cooking involved for the parents. All a parent or kid had to do was pop it in the microwave or oven.
I partnered with a chef named Travis Bettinson who specializes in cooking SCD food. Not only that, his food is kid tested. He has been cooking SCD food for kids with Crohn’s and Colitis at Camp Oasis (camps for kids with IBD) for years. He also did all of the cooking for a recent study at Seattle Children’s Hospital, studying the effects of the SCD diet on IBD.
I became a member of DC Union Kitchen, a food incubator in Washington D.C., which provides businesses with a best-in-class, professionally managed commercial kitchen for production. They also provide distribution and have dozens of relationships with retail partners in order to bring products to local and national outlets, including 20 Whole Food Markets.
Most importantly, we created Caleb’s Club, an exclusive online club just for kids with chronic illnesses, where kids get together, hang out, share funny videos, images, music and experiences. Caleb runs the club and the goal is that no child should ever feel alone or like an outcast again.
We decided on our first products we would bring to market. I asked Caleb what food he missed the most and that helped drive our decision, combined with Travis’s already successful recipes.
We decided on:
Non-dairy Tomato and Sausage Pizza
Bean and Pork Enchiladas
We knew that our food not only had to taste good, but it had to look good as well.
We are excited to announce that we’re opening our store on June , 2017. You can begin to place pre-orders for pizzas, chicken nuggets and enchiladas. All pre-orders are discounted at 20 percent, so don’t miss this great opportunity to get your grain, gluten, sugar, preservative free fast food at a deep discount. Real food, real fast. Real good.
Anger is a taboo subject. No one talks about it. We make jokes about it, we push it aside like it’s that one relative no one wants to be around. We are embarrassed by it, shuffling it around with our feet. Saying out loud that we are angry at our diseases is unacceptable in our feelgood society. “Holy cow, if I tell someone I am angry at my Crohn’s, they might think I can’t handle it or rush in to fix me or worse…they’ll think I’m ‘unstable.'” So here goes – and I am quite stable, I assure you. Angry, but stable.
I know anger. It’s been with me for so long. I know how it smells. I know it’s twisted game of hurt, shame and blame. It flays open my belly like a surgeon’s knife, exposing the truth of my life with Crohn’s disease to the world. The world I hide from…the world that only wants to see perfection and fairy dust unicorns.
I try to abide by anger’s rules. I swipe mascara across my lashes, dash on lipstick, open my drawer and pull out whatever face I need for the day. If it’s a day of seeing my family, then it’s the “I’m just fine face.” If it’s a doctor day, then it’s the “face of resolve.” There are days I feel like a burden and anger fuels my every movement. Anger is always there, right at the edge, teasing me, threatening to swallow me whole. I take my bat and hit my bed at the anger because I know anger will hurt me if I do not move that energy. I send my cats scampering for a safer place but I have to do it and it works.
When Crohn’s creeps up and steals my energy and strength, reminding me I am disabled when I want to work, when I want a simple pleasure but it’s thwarted because of the pain, at times I am at a loss of how to deal with it head on. Sometimes my anger blurs my vision, alters the words heading towards the comprehension part of my brain. It all comes out wrong. Like at the many, many doctors I need to see…their voices drone on like the sound of a buzzsaw in my head. Do this, take that test, get this scanned, give blood again… I go through the motions as I am told but inside I feel my anger as real as the next needle stick I get.
I breathe deep, I roll my head and then I acknowledge my anger. I know that today I need to send the mail to the correct address or I’ll smear it, unfairly, all over some innocent bystander. Until I do this, I cannot trust my mouth filter. I journal, I sit quietly and I introduce myself to my anger. I ask, “So what brought you here today?” We talk and I tag it with the correct correlation. “I’m here today because our pain level is too high” or “I am here to protect you from the hurt we feel all the time” or “I am here because we have to stay in bed again today and I want to go out.” Like a mother, I am beginning to understand my anger and I want to take care of it. “Maybe we need to talk to our father about what he said,” I say to my anger. “Or why don’t we ask more questions when we see that new specialist.”
It’s OK to be angry, it’s OK to be mad. It doesn’t mean we are “unstable.” If anything, it shows we are a living, breathing, imperfect human doing our best in a rough situation. Giving ourselves permission to acknowledge that anger is actually healthy. Allow it, but you first must take the time to understand it, nod at it then send it packing…until the next time.
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