Underneath it all: My Raw Reality of Doing Life with a Chronic illness (Hidradenitis Suppurativa)

A little over 10 years ago I sat in a doctor’s office unaware of what was going on, unaware that this wasn’t just another illness I was going to have until the medicine kicked in, unaware I had a chronic illness with no cure.  

Backtracking just a little before finally finding this doctor: One day I woke up with a strange lump under my right armpit it wasn’t really bothersome so I thought nothing of it… until it grew, and the pain was almost unbearable. I was so embarrassed – what the heck is wrong with me!? Other lumps began popping up around it – my parents and I thought I may be allergic to my deodorant. When I switched deodorants and that didn’t work I began to really freak out. I was already an overweight self-conscious teenager with raging acne and just had surgery for a pilonidal cyst.

At my first appointment with my (then) dermatologist she told me I needed to clean these areas better. Can you imagine being a self-conscious teenager and someone telling you that you have poor hygiene!? INFURIATING but, I digress on that –she gave me lotions and creams galore to try and my mom began researching like crazy to find out what this was. At this point these growths had begun to ooze. And my mom found this crazy rare disease online and we knew from the pictures and descriptions that was it – hidradenitis suppurativa – and what are the odds there was a woman, a doctor who was a pioneer in research for this less than an hour away! That dermatologist I first went to told us there was no such thing as a specialist in this and any dermatologist would do the same treatment she was– uh yeah no, bye.

This doctor my mom found changed my life. I know so much more about what I am going through because of her. I am even pictured in some of her published studies! Anonymous patient fame 🙂 Heyyyyy.  

This is when the surgeries began
. And the struggle of high school was more real than ever. Honestly, most of it is a blur and was quite depressing. I had three surgeries, but one in particular stands out the most. These surgeries are called ‘deroofing’ and are extremely unpleasant to experience. This amazing doctor in New Hampshire opened the office for me on a Saturday to come in and remove this killer tunnel system under my left armpit – my dad usually is with me in all of these nasty gory situations, but that day my champion mom stepped up to the plate. She may have cried more than me, but she was the strength in that room and kept me occupied and my attention away from what was going on. There is only local anesthesia in these situations, so I smelt, heard, saw, and felt the sensation of the whole thing. I know this was awful for my mom to not only watch that, but watch me go through the entire battle with this .. disease. For her and because of her I was strong.

I hated the way people looked at me with sad eyes when the visited or helped me change my dressings – I didn’t want to be seen as weak. It broke me and I began thinking of myself as some weak patient, and put up this armor and hid some very real, very scary emotions so I didn’t come off as weak or someone to pitty.

high shool graduation night

Off I went to college – my self-esteem was shot, I was uncomfortable in the most simple situations. It seemed so easy for my roommate to build these friendships (I know it wasn’t, I know she had to step out of her comfort zone to do this) and there I sat – SO uncomfortable in my own skin. I called home in tears often – yes, maybe partially homesick, but I was scared, scared of what was going on inside me, scared of this disease being the only thing people see when they looked at me.

So, I decided I would tell no one, I would struggle, I would fight in silence – if someone saw and asked or saw me limping or wincing in pain I would brush it off tell them it was no big deal. Some of my closest friends had no idea what I was going through. It was exhausting.

Shortly after beginning my first semester of college my birthday came around – people in my hall actually celebrated my birthday with me – there was cake, balloons, FRIENDS, yes FRIENDS, I had those! Looking back there are and were so many people that cared about me on that campus, they were my family and would have accepted me had they known what I was going through.

What saved me from giving up on this whole college thing and heading home after my first year, heck my first semester, lacrosse, I was a college athlete, and it was also the biggest hurdle I faced through my journey with this disease.

Although, my first month really brought me down and almost caused me to quit. It was HARD – any college athlete will tell you the hours of practicing, lifting, skills sessions, while maintaining good grades, and of course a social life was already hard, but add this disease into the mix of all that it was even harder.

I just had surgery the summer before going into college on one of my armpits as I talked about above with my mom – I couldn’t do a lot of the summer workout packet and knew I wasn’t in the best shape, I was also overweight as I had been my entire life. Again, I was uncomfortable, self-conscious, and the self-esteem continued to plummet. One conditioning I remember being on the turf doing mountain climbers and the pain was too much; tears were streaming down my face I literally could not move any more. I told my coach and she definitely wasn’t happy and sent me to the trainer.

I remember sitting on the trainer’s bench surrounded by other athletes. She took a look at my armpit and said, “there is nothing there, it’s just a scar you know we aren’t just here to get you out of conditioning, I’m going to let your coach know you are coming back and there is nothing wrong” I was so embarrassed, humiliated, horrified – the whole walk back to the bubble I balled my eyes out. No one knows what I am going through, no one knows what this disease is, and I barely know what it is. I can’t do this.

I never went back to the trainer again. Until years later in my senior season.

Flares came and went, life happened and I was stressed and overwhelmed more than I wasn’t. Looking back now I realize I had random symptoms of the disease and autoimmune. Intense night sweats, sensitivity to various foods and an extreme reaction to sugar (holler at my enablers haha).

My junior year I suffered through an eating disorder – I barely ate and worked out a lot on top of my lacrosse program. Body shaming and low self-esteem in women’s college athletics is real, but that’s a whole other story. I isolated myself and definitely wasn’t the person I wanted to be. My three year relationship was slowly falling apart, he was there for me in some of the hardest times and I am forever grateful for that, but I was becoming more comfortable than I was building a relationship. It was one of those situations where I was having trouble loving myself, never mind expressing my feelings and showing someone else I cared – he changed my life in many ways and I do love him for that, but things came to an inevitable end before/in the first month of my senior year.

some of the amazing lax family

Senior year was my best year. I had amazing friends and was closer than ever to a lot of people who I began pushing away the year prior. I was relatively in shape and my life was about me, I hadn’t had any flares of my disease in over a year and I felt great. Life was about to happen and although I was scared shitless I felt I was in a point I could handle whatever came my way. In the midst of it all I was more confident than I ever had been in my life and I met my gem, my strength, my support, my rock, who continues to be everything anyone would ever want in their life.

I graduated Magna Cum Laude, multiple honors and leadership awards – still no one knew what it took for me to get though some days and what I was going through mentally and inside. I was so proud of myself I cried as I crossed the stage. I cried for all the moments I was alone fighting, all of the times I was in a Division 2 College game in agonizing pain – giving it everything I had. My parents knew most, not all of what I went through to get there and I know they were proud of me, and still are.

One thing I will thank this disease for is the relationship with my mom. I had always been close with my dad (Daddy’s Girl for life!) and for whatever reason never had the greatest relationship with my mom. Through this all we became so close. I remember in the early stages of this disease watching her struggle with me, she fought for me harder than I had ever seen anyone fight before – financially I know this was a hardship, but she got me the best care and even found the specialist I still visit today.

my real life superheros

Anyway, after college I made the decision to go to grad school a few states away from my comfort zone, I had gotten a Graduate Assistant position coaching lacrosse and I was ecstatic. I vowed to myself that I was going to be positive for this team I was going to have an impact on their lives and not let any of them fall through the cracks like I had. Little did I know THEY would be the ones changing my life – I had an amazing mentor who is stronger than I think she will ever know and has changed and touched so many lives. She is way more than a lacrosse coach. And those girls, they looked up to me, they changed my life – the freshman in my first and second season taught me what it meant to be confident in myself and to be comfortable with embracing my personality.

I had no HS flares until the end of my second year, but this time around it was different. I was in an amazing metal space and wasn’t letting it bother me. I met so many amazing people outside of lacrosse too, at my night/weekend job, I met some amazing friends in my classes I met my soul sister, a true best friend – from the moment we began talking I knew this girl was going to be a friend for life.

This is when I found running – I fell in love with it – I had HS flares and I was running say whaaaat! I also decided to run a half marathon, before running my first 5k. I’m telling you – confidence- its life changing.

best friends come from the most unexpected parts of life
I graduated with my master’s degree, again with honors, and moved back home. After a month of being home life threw
me another curve. I had more intense night sweats than I ever had before, I could barely get out of bed – I was on vacation with my family and could barely walk to the beach without needing a nap. 

Doctors, tests, and here we go again. I tested positive for Lyme twice, but the blot test as negative. Doctors defaulted to Mono, so I accepted that. I used this time to not only binge watch every series on Netfilx, but I applied to jobs. Two months in and I was barely feeling better, but got an interview and then got the job. This mystery mono sidelined me for a while from my love of fitness and running – I put back on some weight.

And that’s where I am today in that job, but am back at my fitness adventures and owe a lot of my coming back to life to my best friend who I met in grad school. Who brought so much good into my life I cannot even explain. 

Recently as many know, I had one of the biggest flares I have had in a very long time. I walked into the HS specialist for the first time in years – and had flash backs of being there – the friendly loving nurses still the same and greeted me with that it’s great to see you, but not great that you are back. I had surgery that day and it was devastating. I was alone, drove myself home and when I got there I sat in my car in shock – my parents texting me confused as to what just happened, the gem blindsided and taken aback – having never experienced this side of the disease, it was new for him. I gave myself a day to process and got right on track with my nutrition and eating well. and accepted the once a week doctors’ appointments coming my way. As soon as the surgery location on my left thigh healed, I felt another coming on the right side- thankfully it was caught early enough and shot with a cortisone/mixture injection.

post-surgery thumbs up

Some of the medicines I am on make me extremely bloated and puffy throwing all hormones out of whack causing my weight loss to fluctuate and change daily. It’s something I am working on accepting, but refuse to give up my healthy lifestyle and I know in the long run, all of this effort isn’t for nothing.

Well, my story doesn’t have an end … 10 years, thousands of tears, hundreds of days of pain, 6 surgeries, countless tests/shots/and medicines later here I sit in that same doctor’s office, more aware than ever – still with this incurable chronic illness. But these days I share my story, the people in my life know what I am going through – I am not hiding anything this disease doesn’t define me, it isn’t who I am, but there is no denying that it is a part of me. I am stronger than I ever have been in my life and I want others going through this, especially young teenage girls to know that you CAN do this. You are not worth anything less because you have this disease. The strength comes from within yourself, while your body may be attacking itself, you can beat this mentally and you can put up a great fight. We will win this, we are warriors.

Fight on, be bold, live happy,

Xx – J

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