Living with Hidradenitis Suppurativa

Living with Hidradenitis Suppurativa

Each day I live, I carry this on me, but that doesn't mean that it defies who I am.
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Within a single day, I can experience different levels of pain varying from a feeling of an itch (if I'm lucky) to someone twisting my parts of my skin into little circles. However, most people wouldn't notice that just by looking at me.

I have a chronic skin and gland disease known as Hidradenitis Suppurativa or HS for short, because even I can't say that first name. I have also heard it as Acne Inversa (AI) but its not nearly as common. This disease is something that I have lived with since right around the age of 10.

According to the Hidradenitis Suppurativa Foundation website, HS is described as, " a chronic, non-contagious, painful and quality of life impacting skin disease that causes boils to form in the folds of the skin."

Which basically means, and the way I describe it to my friends, is that I have very deep painful and huge pimples all over my body.

Up until the past few years, there hasn't been much information on this disease. I went through life just accepting that I will always and forever be in some amount of pain or constant discomfort. There is a campaign that recently came out, #NoBSaboutHS, that has allowed those affected to share their stories and experiences with the disease. I know when I first saw the ad for it, I bawl cried.

I won't get into the gory and disgusting details of HS but if you want to see it for yourself, just do a google search. However, since they are all over my body, I have to wear, act, and eat a certain way to try to avoid the pain. I absolutely cannot wear jeans that are too tight in the midsection. They will rub the wrong way and cause one or many to form. If one on my leg recently drained, I have to walk a certain way to make sure it doesn't hurt.

I have always been extremely hesitant to discuss my disease. Mainly because it's embarrassing and I feel like everyone would judge me the moment they saw the areas. I hardly ever wear dresses, sleeveless shirts, or shorts because that is when it shows or is worse in.

I would be shy to open up to partners about it, because I was scared that they would think it was an STD, which, as previously stated, we know its not. It is genetic; my father had it, my cousin has it, my grandfather had it, etc. I would hide away, turning of lights if things got above pg-13 and just refused to open up about it.

Each day I live, I carry this on me, but that doesn't mean that it defies who I am. Most people don't realize that I have this disease. I give back to my community, I have amazing friends and family, and I have hopes and dreams that I do not intend on stopping to achieve. I am Leah Schoolcraft and I have Hidradenitis Suppurativa.

For more information about this disease, symptoms, treatments and resources please visit http://www.hs-foundation.org/what-is-hs/

Cover Image Credit: Leah Schoolcraft

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To The Girl Struggling With Her Body Image

It's not about the size of your jeans, but the size of your heart, soul, and spirit.

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To the girl struggling with her body image,

You are more than the number on the scale. You are more than the number on your jeans and dresses. You are way more than the number of pounds you've gained or lost in whatever amount of time.

Weight is defined as the quantity of matter contained by a body or object. Weight does not define your self-worth, ambition or potential.

So many girls strive for validation through the various numbers associated with body image and it's really so sad seeing such beautiful, incredible women become discouraged over a few numbers that don't measure anything of true significance.

Yes, it is important to live a healthy lifestyle. Yes, it is important to take care of yourself. However, taking care of yourself includes your mental health as well. Neglecting either your mental or physical health will inflict problems on the other. It's very easy to get caught up in the idea that you're too heavy or too thin, which results in you possibly mistreating your body in some way.

Your body is your special, beautiful temple. It harbors all of your thoughts, feelings, characteristics, and ideas. Without it, you wouldn't be you. If you so wish to change it in a healthy way, then, by all means, go ahead. With that being said, don't make changes to impress or please someone else. You are the only person who is in charge of your body. No one else has the right to tell you whether or not your body is good enough. If you don't satisfy their standards, then you don't need that sort of negative influence in your life. That sort of manipulation and control is extremely unhealthy in its own regard.

Do not hold back on things you love or want to do because of how you interpret your body. You are enough. You are more than enough. You are more than your exterior. You are your inner being, your spirit. A smile and confidence are the most beautiful things you can wear.

It's not about the size of your jeans. It's about the size of your mind and heart. Embrace your body, observe and adore every curve, bone and stretch mark. Wear what makes you feel happy and comfortable in your own skin. Do your hair and makeup (or don't do either) to your heart's desire. Wear the crop top you've been eyeing up in that store window. Want a bikini body? Put a bikini on your body, simple.

So, as hard as it may seem sometimes, understand that the number on the scale doesn't measure the amount or significance of your contributions to this world. Just because that dress doesn't fit you like you had hoped doesn't mean that you're any less of a person.

Love your body, and your body will love you right back.

Cover Image Credit: Lauren Margliotti

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It's National Eosinophil Awareness Week And More People Should Be Talking About It

It's time to raise awareness about eosinophil-associated diseases and support those, including myself, who are affected.

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For anyone who is unaware, May 19 to May 25 is considered National Eosinophil Awareness Week as recognized by the American Partnership for Eosinophilic Disorders (Apfed) since 2007. The purpose of this week is to raise awareness and help educate individuals on the various eosinophil-associated diseases. Despite its existence being virtually unknown to many people, this week has become very significant in my life and I think more people should be having conversations about it.

If you had asked me about eosinophil-associated diseases two years ago, I wouldn't have been able to say a single thing besides maybe defining an eosinophil the way I learned to in my AP Biology class senior year of high school. But as of a few months ago, it has officially been one year since I was diagnosed with an eosinophil-associated disease — something I never imagined would happen in my life. While I won't share too much of my own experience because it's honestly quite personal and still a little sensitive to discuss, it's safe to say that eosinophils completely changed my life.

I was fracturing bones like it was my job — I think I had upwards of nine stress fractures in my legs and feet in a year and a half time period. I had to stop playing sports my senior year of high school and couldn't run at all. I was nauseous 24/7. I was rapidly losing weight to the point where I had lost close to 35 pounds and none of my clothes fit me. I couldn't swallow anything, including water. Eating was painful. I had no appetite.

I was sick and in pain ALL the time to the point where I would get emotional or even cry.

I missed school days, tests, exams, social events, and eventually had to quit my job for an entire summer because even getting out of bed was hard for me. Ultimately, even the decision about the college that I chose to attend was partially based on my health and the doctors I would need to visit frequently.

But the most significant thing was that I was experiencing severe depression and anxiety and was honestly just straight-up scared. Think about it: I was experiencing a wide range of life-altering symptoms yet no one could figure out why and even when they did, there was no cure and only limited options for treatment. Unfortunately, this is the reality for many patients and their families. The process of diagnosing an eosinophil-associated disease can take years and require pretty much every medical test you can even think of because these diseases are all classified as rare diseases.

I was experiencing symptoms for a year and the journey to an accurate diagnosis took about a year after that. The journey itself was not easy, as it involved numerous doctors and countless medical tests to eliminate other potential diagnoses like cancers, parasites or even celiac. Since then, I have been involved with treatment for a little over a year. For me, treatment involved several medications and steps, including gaining the weight I had lost.

But the main piece was cutting pretty much everything out of my diet, meaning no gluten, dairy, soy, eggs, seafood, or nuts. Gradually over time this treatment involves reintroducing the foods individually (each for a three-month period) to see what can be tolerated or which foods make my eosinophils act abnormally and then restricting my diet accordingly.

Since starting treatment my life has been gradually changing in a positive manner, which is something I couldn't have imagined when I initially became ill. Yes, I will still be sick for the rest of my life and experience the chronic waxing and waning of this disease, but hopefully years of experience and knowledge will make me better equipped to handle it. One day there may even be a cure. But until then I will continue to raise awareness and participate in National Eosinophil Awareness Week in solidarity with the few who are also sharing in my experience living with an eosinophil-associated disease.

While I wrote this article with the intention of participating in Eosinophil Awareness Week by raising awareness and educating (to some extent), it was about more than that. I wanted to give you a synopsis of my story and the challenges I face to make this week more understandable and more real. This was because I know that eosinophil is not only challenging to say (even I struggle) but also challenging to conceptualize.

If you're interested in learning more or you're still confused, I recommend doing some quick reading on Apfed's website because they are extremely helpful in the way they simplify the complex information.

If you would like to see what you can do during National Eosinophil Awareness Week, you can also click here to visit Apfed's day-by-day guide for the week, which included some fact sheets, information about wearing magenta to support the cause, and other information about individual participation.

Editor's note: The views expressed in this article are not intended to replace professional medical advice, diagnosis, or treatment.

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