How I told my boyfriend about my IC

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Image- Rachel and Aaron taking a selfie cheeks pressed together smiling in NYC

 

The first time I told Aaron that I had Interstitial Cystitis (IC) was on our second date. We were at the Silver Diner and I was so nervous to tell him. I had been single for a year when I met him. I had been busy focusing on myself and trying to take care of my health while working, volunteering and finishing up my BA. Before I met him, I was also certain that I was going to be a spinster. A fact that I loved and still love to talk about, especially because I have so many cats. 

But I knew I had to tell him about my IC. So finally I just told him. I have a bladder disease called Interstitial cystitis. He listened while I explained it. I was still so nervous. What if he turned and ran. Or just never talked to me again. This is a chronically ill person’s fear, that they are undateable or undesirable. He listened and asked a few questions.

However, it should be noted that he was/is on a ‘special’ diet of his own, the ketogenic diet to lose weight. So his diet was/is limited as well but in a different way than mine. In the end, it’s different because I have a disease and he is perfectly healthy. But I think the fact that his diet is limited made it easier for him to accept my food limitations. As someone who was already used to cooking his own meals and trying to customize things when he went out to eat.

On our third date, he invited me over to his place where he made me IC friendly pizza from scratch. Because I told him how much I love pizza and that it’s hard for me to eat pizza often because I can’t just order pizza.. it has to be made. So he made it from scratch and it was amazing. He even downloaded the IC app on his phone to make sure he knows all the bladder friendly and cautionary foods at all times.

During the beginning of our relationship, I said something along the lines of him having to deal with this burden of mine. He said something that I will never forget, I don’t look at it that way, I look at it as simply accommodating your needs. That’s the kind of thing people with a chronic illness need to hear and of course, people who say it need to mean it. 

We have been together a year now, and if we are out driving, the second I tell him I need a bathroom he finds one. No questions asked. He knows I have IC and he will never question if I can hold it because I can’t. When we go places, if people offer me food, often before I can even say anything, he will ask them what’s in it He is very conscientious of the food he makes for me and the food he allows other people to give me. 

Oy! Was I the lucky girl to find this goy* straight away who takes care of me when I’m sick, hurting and in pain.

*goy – a yiddish word meaning non-Jew. 

 

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Image- Aaron and Rachel taking a selfie making silly faces with tongues sticking out in front of Spring Awakening poster in NYC

 

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Food as medicine

 

[Image description- blue and white plate with spaghetti and homemade meatballs with a side of zucchni] 

After months of debilitating pain and frantic searches for meds of all sort, I have decided to do myself a solid and change my diet completely. I will be cutting out processed foods, sugars, carbs. My body is literally screaming for help at the top of it’s lungs and if I didn’t listen to it… not only would I be making myself miserable, I would have nobody to blame but myself for my own misery and pain.


After a lot of time in the IC Support group online, it seems that the people who have the most success in remission are people who drastically overhaul their diets. And use food as medicine. Approaching food as medicine and looking at the body in a holistic way makes sense for people with a chronic illness, like IC. 

After a lot of time in the IC Support group online, it seems that the people who have the most success in remission are people who drastically overhaul their diets. And use food as medicine. Approaching food as medicine and looking at the body in a holistic way makes sense for people with a chronic illness, like IC. Very soon I will be drastically overhauling my diet; cutting out carbs, sugar and processed foods. I never thought I would get to this point. I never thought I could or would. But I never thought I would give up orange juice or spaghetti sauce but I did because of my IC. And the pain continues. So the question becomes…what wouldn’t I do to make it stop? Maybe those foods don’t harm me, but I suspect they do. And yes they are delicious, but is it worth the pain they cause? Some people think so.

I understand that we have backward values here in America. We worship the carb, comfort food, and the fast meal. But we are killing ourselves, our children and future generations as painfully as possible by doing this. Chronic conditions are cropping up in droves among 20-30 somethings. Is it a coincidence? It could be. But it’s unlikely. We are products of the DNA we carry, what happens to us in the womb and of our generation. All of these factors are starting to add up and create chronic illnesses en masse where there was once none.

And it really doesn’t help that the medical community looks at us as body parts.

It has often been my experience with doctors, that they want to focus on the part of you that hurts. Where is the injury? IC is in the bladder; therefore we treat the bladder. But hey, here’s a crazy thought, I am more than my bladder. I could just be a giant bladder with long red hair… sometimes I definitely feel like that but in reality, I am a whole person. And IC needs to be treated that way, holistically.

Here’s a prime example of the medical community looking at me and just seeing a giant walking talking bladder. When I was first diagnosed with IC, I immediately began researching food to eat. I found that celery is extremely beneficial to people with IC so I made it a habit it to put it into my food every single day. So what can this celery do exactly? It can lower inflammation, reduces uric acid in the urinary tract (which is good to prevent UTIs and good for the burning while peeing that IC warrior’s experience). 

So… Celery! Who knew? Not my doctor, that’s who. I went to her bi-monthly in the beginning and I went to see her and told her this information. And she told me she never heard that before. I was flabbergasted. I realize that the medical community doesn’t care to look at the body as a whole and doesn’t teach food as medicine, but in all her years as a urologist working with IC patients…nobody ever told her that? or she never went a did a little extra research on her own??
When you, or a loved one, have IC, Migraines or other chronic illnesses, it is so important to do the research. Doctors serve a role and they do the job to the best of their ability. IC is a systemic issue that needs to be looked at and treated holistically. 

 

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[Image description: Celery is 95% water and 100%, not pizza. Below the wording is a logo from NBC that says The More you know floating on a shooting star]

 

 

On coming out

 

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I was diagnosed with IC in March 2015, so almost 2 years ago. And I always thought it would just be easier to not tell people. The less people that knew the better. If people knew, it would just make things more complicated. It would create more questions. People might question me. They might question if I am actually in pain or if I actually have this disease/condition/illness/whatever. There’s the dreaded, “But you don’t look sick”. That every chronically ill person loathes.

And what if they looked at me differently after I told them? What if it makes me appear weak? Or like I can’t handle the stress of whatever comes my way?

I didn’t want to have to explain it. Maybe I was embarrassed too. Who wants to talk about their bladder and lady parts or [insert body part here] with their family? Or friends? or strangers? or whoever? It’s personal. It’s uncomfortable.

But guess what? That’s my life. My life revolves around my bladder now. I have slowly started coming out and telling more people. It started last year… one year ago during Chanukah when I was kind of forced into telling my Aunt Ro. And I am so glad I did. It is one of the best things that has happened to me since I was diagnosed. And one day I hope she reads this and knows that I feel so fortunate having her support me through this. She works at a urologist’s office, so she knows what goes on with people who have IC. When she found out I have IC she started checking in on me. Which might seem like nothing to some people, but to someone with a chronic illness… it means a lot.

People who have chronic illness often feel isolated and alone. I am no different. I have a wonderful support system. My amazing boyfriend, Aaron, who is there for me every day. My friends Becca, Shelby, Christine, and Nai. And, of course, my mom. And a few other people. I am so lucky to be supported and loved. But I still feel alone in my pain. Because as much as these people love and support me, they can’t feel my pain and they can’t understand what I am going through. I joined a support group online early on. And I have become very active in the group recently. There is comfort in knowing that I am not alone.

But back to my point. Over the last year, I have started telling more people. I told 2 out of 3 of my teachers this past semester. And I will tell all my teachers this upcoming semester. I’ve told a couple of my cousins about it. And last night at my family Chanukah party I told my Great Aunt and my Uncle. It feels like a huge weight is being lifted off of me every time I tell someone. Yea…it’s uncomfortable. But that’s my life. That is life. Why should I struggle through this alone when I have people who care about me who are willing to help me carry the load?

And like many chronically ill people, I do worry that they will get tired of me and start thinking of me as a burden. That is a frequent worry of mine. But I have to trust that these people love and support me and will always do so.

Coming out to friends and family as chronically ill is never easy. I waited until I was ready to tell people and that’s okay. If I never told anyone…that would be okay too. But feeling less burdened because other people know what I am going through and can help me through it… that’s a good feeling too.

 

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[Image description: coming out as anything is never easy. and in the case of people with invisible chronic illness, there comes a time when if you don’t tell people it starts to negatively impact your health]