Becoming Visible: My Life with ‘Invisible Illness’

I am a face of “Invisible Illness”. I want to show you what one symptom of living with an “invisible” me is like, in hopes others struggling with illness, disease & the purgatory of Undiagnosis know “I see you” to give others insight what my invisible illness looks like. So let me take off my mask..


I live with multiple Autoimmune diseases; often referred to “Invisible Illnesses” because these diseases cannot be seen to the naked eye. Because of this, many who are diagnosed with Autoimmune diseases, like Crohn’s Disease or ulcerative colitis, are not taken seriously because physically looking at me, you cannot see the physical toll the internal destruction and irreversible damage.
My invisible illness means taking upwards of 20 pills a day. Some of these medications include daily or daily injections, monthly infusions, etc. Some are so harmful, they016aa680ca304250b0560f8f52076eb0ac84a29bef must be identified as “black box” medications. This means death is a possibility and has been reported as the cause of death in some patients. I don’t say this to scare anyone, but medications for chronic illness can be huge decisions that can greatly impact your quality of life, not to mention your finances, social life, holiday celebrations & major milestones in your family’s life. it doesn’t show the anxiety of knowing some weeks I’ve had to make the choice of being able to afford groceries or medications. It doesn’t show the hundreds of denials from insurance companies, stacks of appeals my doctors and I have fought endlessly for & the major disappointment of never getting the medications I need in order to be able to save an organ. It doesn’t show you the thousands of prescriptions I’ve taken since age 15. It doesn’t show the guilt of failing multiple medications & never knowing when a drug that will work for you shows up. It doesn’t show the guilt, missing out on amazing opportunities & chances to achieve my goals. 

My invisible illness is located in nearly every organ: skin, small bowel, large & small intestine, rectum, esophagus, sympathetic nervous system, musculoskeletal system, deteriorating bones due to long-term steroid use & joints that begin to fuse together. You cannot see the obstructions in my intestine, the ulcers in my esophagus, the number of times I’ve thrown up, nor time spent on the bathroom floor writhing in pain. You can’t see the amounts of blood in my stool that makes me so anemic I’ve required blood transfusion. What others can’t see is an infection in my intestinal tract, the long-term side effects of small doses of chemotherapy injected weekly and monthly infusions. Invisible illness is blood clots, respiratory infections, sepsis, pancreatitis, exploratory surgeries, fusing of bones, inflammation of eyes, ulcers in the nose and mouth, insomnia, osteoporosis. it causes cancers, changes in weight, my skin, my hair & my self-esteem. It doesn’t show tubes, PICC lines, NG tubes or preps for surgery. It doesn’t show anxiety, withdrawal from friends or the lasting effects of PTSD many patients experience after traumatic & near-death experiences.

It doesn’t show the self-esteem Iose every time I look in the mirror and don’t recognize the reflection, wondering where the “old me” went and what, if anything, I can do to get her back. There are times my illness becomes visible. My eyes sink in, I’m visibly tired, swimsuvery pale. Sometimes I’m thin, making it more apparent. Rude, uninvited comments like “you look much healthier than before”, only to be left thinking “was I that fat before??”

20140213-191351.jpgIt doesn’t show the friendships I’ve lost because I’ve had to back out of plans, fun events and celebrations. It doesn’t show how hard it is to maintain a relationship with someone; the fatigue, the guilt of not feeling well enough to care for myself and the guilt knowing they may have to care for me,. Caregiver/Family tip: They may not always know what to say or how to offer help, but even offering to come over, sit with they & just stay awhile speaks volumes. A little help gives a lot of hope. Pain is incredibly lonely.5047f22d-b48b-41e5-863d-3b404bb8b64e

Despite my invisible illness, I’ve mustered strength to run a couple 1/2 marathons, educate myself & become an advocate for others. This past year, I was asked to be an Ambassador for an organization I have such great respect for. For nearly 4 years, I have been using the Charity Miles app, which donates to the Crohn’s & Colitis Foundation of America. It’s extremely rewarding to be well enough to train for endurance events, especially while training and fundraising for Team Challenge events.

Recently, I needed emergency care for my arthritis, so at 2am, I called the on-call Emergency Rheumatologist. I explained my situation and was brushed off and told to “just get through tonight”. I hung up the phone and sobbed. I felt completely see, invisible illness isn’t just just brushed under the rug by common folk, it’s also invisible to some of our specialists – who challenge us & presume our pain “cannot be that bad”. You may be able to see my glassy, inflamed eyes with bags underneath them, but no one knows the struggle my insides are putting me through. Your own doctors & nurses do n’t understand the excruciating pain of what it means to be a patient living with autoimmune disease, trapped inside a body in which your cells attack your entire body. the cells meant to protect you communicate with one another fight each other instead. if we can’t get providers to understand the seriousness of our pain, who will?

01e658b86c12aad902753f3b75349acfe021bf17b9I struggle mentally, like many other autoimmune patients, with putting any biologic into my body. I’m weak, foggy & often sore and sick the next day. ask yourself: How would you
plan my week around which day I would inject? Would you do Fridays so you could rest/recuperate over the weekend?  would you inject Mondays so that by the time the weekend came you would be able to enjoy it?.. As someone living with an illness that seems obvious only to start to cycle over right away on Monday? Quite a perspective, isn’t it?



What it shows is my strength, despite the odds I’ve dealt with, the redirection I’ve taken in stride & the pride I feel overcoming each flare I experience. Illness changes you. When we explain to others what it’s like to live with invisible illness we often say that our insides don’t match our outsides. We share our stories in hopes that our future will include more support & give others courage to tell someone “I’m struggling too “. Sometimes we just need people to simply be there, not analyzing our every move, not picking us apart because they don’t perceive our illness to be the level of “disability” which people won’t mock us for parking in the handicap zone, for using “the perks” of Disability Services on campuses, missing work to “sleep all day” or “catch up on talk shows”. We need you just to be here. Just be with us, even in silence, to just feel.. Visible.



Not All Holidays Are Created Equal

For many people, holidays are a point of struggle. Memories, sometimes even flashbacks of hospital visits, can linger, blocking good holiday cheer. We sometimes fear that we may land in the hospital again for yet another holiday. This tends to be the case for many people dealing with flares around the holiday and it’s not easy to manage while in the spotlight socializing at holiday get-togethers. In fact, the stress of even getting there can be a big trigger.

Just getting dressed to go to a party can be stressful and emotional.

When you’re pulling up your dress pants or putting on your Sunday or Christmas/Holiday best, things might take an ugly turn. You may realize that you’re clothes have suddenly become parachutes that show off your worst assets. Then there are a few of us who put on our favorite dresses and realize that due to the steroids we’ve been on long-term, “snug” is a word that no longer applies. It can be detrimental to your self-esteem and mental health and it can completely take you by surprise.

Preparing food can be difficult, but sitting down to eat while others feast on things you cannot touch can be even more painful. It can be hard sometimes to control your urge to grab “just a small bite” knowing that you will most likely severely pay for it later. And sometimes, there comes a point where we just want to live in the moment and we will take that bite with the chance.

Small talk can be difficult for those living with any type of chronic illness, too.

Especially for those whose lives are consumed by the illness. When it comes to small talk, you might think “no one wants to hear about how sick I actually am or how my last hospital visit went.” So many times, we remain quiet, uncomfortable and count down the hours and minutes until we can go home, hop in our PJ’s, pull out our flare foods and binge on some Netflix.

Don’t be offended.

We go, despite all of these concerns, anxieties and fears… because we love you. And we need your support. So please, don’t be offended.


Throwback picture of Halloween – a holiday every IBD-er can enjoy 🙂


Read the FULL article here:

Crohn’s Disease of the Vulva

In the last few articles (What Women Should Know About Living with IBD, and Crohn’s Disease in Your Where?), we’ve talked about the complications that the female reproductive system can endure, such as vulvar inflammation. In this article, we’ll dig a little deeper into how Crohn’s can manifest in the vulva, how to identify symptoms, and how it can be diagnosed. It’s not talked about enough, and far too many women suffer in silence, not knowing where they can find support.

Crohn’s disease of the vulva can be very painful.

It can be extremely hard to diagnose and additionally, hard to treat. Often, some of these complications can be misdiagnosed due to symptoms presenting without bowel issues or problems. My care team involves a high-risk OBGYN and a Urologist as well as my most important team member, my GI.

But there are some things that GI’s might not specialize in, like vulvar Crohn’s, that may require multiple team members. This will ensure they are providing the best care for patients who struggle with vaginal symptoms.

So what are the symptoms and what can exactly be defined at “Vulvar Crohn’s?”

Swelling of the labia, ulcers in/around the vulva and topical lesions may be some of your first clues. Painful swelling, bumps, and ulcers can become a very serious issue and in some cases, surgery might be necessary if the patient fails different courses of antibiotics and immunosuppressants.

So why is it so hard to diagnose?

First, there is a stigma surrounding these symptoms and many women are embarrassed to deal with these issues. Sex is impacted, there is a lot of pain involved and if you’ve ever had a fistula, you know the pain an open wound or impacted wound can bring. Unfortunately, some of these abscesses and other symptoms can appear like an STD. Many gynecologists will screen for sexually transmitted diseases to rule it out, especially if they’re unaware of your Crohn’s. Some doctors may use a pelvic MRI to help determine the specific diagnosis in addition to finding the right course of treatment.

Again, this is why it’s so important to be completely open and honest regarding your sexual health, including any pain or symptoms you may have. The worst thing you can do is ignore the issue, as it may become incredibly painful, infected and even result in an abscess requiring surgery.

What types of complications are observed in the vulva with this type of Crohn’s?

Edema or swelling of the vulva may occur. Ulcers may also be present. Some ulcers may be completely asymptomatic, with no pain at all, but can wreak havoc long-term. Some may actually appear as small knife-like cuts in the perianal and vulvar regions, or in the folds of the vagina. The most common symptom of vulvar Crohn’s is slow-to-heal labial swelling on only one side. Some ulcers or abscesses may require drainage if they do not respond to traditional therapy.

Have you had experiences with vulvar inflammatory bowel disease? How did it affect your physical or mental health?

See the full post here at Crohn’s of the Vulva


Expecting the Unexpected

One of the worst parts about going to bed with chronic illness is knowing that you’ll wake up still next to it, soon realizing you can’t do a walk of shame out the door to get away because you’re literally chained to an illness that can put out your fire for days. I don’t mean to be negative, but it’s many patient’s reality

…waking up day after day in the same nightmare you’ve lived in for far too long.

Going to bed knowing the next day might be the exact same bad day that was today, maybe even worse. Not knowing what will happen is painful and not having people around you who understand is far more difficult and expends far more energy than necessary.

In June, I experienced joblessness. In October, I lost my insurance. To say that 2017 was a character-building year is an understatement. I learned what it meant to be nearly homeless, on food stamps and not being able to make rent. I learned that taking any job would be not a choice but a necessity for me to keep my house and my rescue animals. I was 30 years old and had nothing left to my name, nothing in my fridge and what’s worse, I felt like I had no support.

When I finally did achieve employment, it was through a very wonderful company that cares deeply about its employees. Health Union has truly saved me in many ways, and for that, I express my solemn gratitude for them and everyone in this community, who seem to want me to keep writing.

My dream came true when I lost everything and I’ve never looked back.

Writing has always been my passion, my way of communicating to the world. I’m an introvert, so when I first had to learn how to deal with a serious disease and then more illnesses along the way, it was extremely difficult to me to reach out for help. And for so many years, I was so grossly misinformed by certain doctors and specialists which made accepting my disease even harder. Not understanding your disease can make you want to crawl into a hole and never talk about it. So I understand why so many people “stay in the bathroom” with their disease secrets. I am certainly glad that I have found support online, through social media and patient advocacy groups that I can truly rely on in my time of need. These amazing, supportive people will also respect my silence – as they know this is one of the ways I cope.

I know that what I do for a living now, working multiple part-time jobs in addition to writing and blogging full-time, doesn’t exactly mean stability to some of my family members or friends. Someday, I wish just to be enough. To make them proud by making others feel empowered and educating others on a disease they may know so little about.

I’m happy now. Genuinely happy.

I may not be where I would like to be financially. I may always have bills in collections because let’s face it,  there will always be more money going out than coming in for me, no matter how many jobs I work. I have two beautiful nieces and nephews and one on the way that I could not be more excited about. I get to travel a few times a year if/when I’m asked to collaborate with other patient leaders and advocates and I’m still amazed that other people want to hear MY story. I’m grateful that both my blessings and curses have impacted people enough to say “can you explain to me how your disease affects you?” The most rewarding thing to a patient living with chronic disease can be hearing “Thank you for sharing your story with me; I have learned so much and have such a different outlook on the things that patients go through.” That, and a few other nice things.


Being a patient is a full-time job and I will back up anyone who says that for the rest of my life. People who don’t experience illness don’t realize how much illness can consume a person’s life and how much it can change their path… until it does.

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See the full article here on Expecting the Unexpected

Advocacy & Politics

I grew up in a family that didn’t speak of politics. I mean, I don’t remember politics EVER being brought into a conversation in any family or one on one conversations. Especially not at the dinner table. In fact, I grew up without TV. I appreciate it now and if I ever have kids, will likely have the same rules apply in my household.

But there came a time in my life that politics became more than a tight-lipped topic.

It came my turn to educate myself, speak up, and get involved with things that would affect my future. That moment came soon after I was diagnosed with Crohn’s disease. I got to vote in the presidential election when I moved away to college and it was a big deal to me, though you’d never really know it by having conversations with me. A time and a place? Well, the last few years it has been the time and the place and it was evident to me that I must do my part to feel heard and to do what I feel I need to.. writing to my Representatives, Resistbot and appeals have been a large part of my vocabulary in the last 3 years.

But one question always seems to float to the surface: why must I have to explain to people why they should care about me? About my well-being? Because for me and my “family,” healthcare is my well-being. And truth be told, no one wants to be just a number.

So why do I continue? Because I know people so much more ill than myself who aren’t able to get out physically to make it out to advocacy events due to their disability. My ability decides my direction – I won’t stop until I physically have to.

My voice speaks for those who can’t be heard.

This is the one reason that advocacy keeps me grounded every day I wake up and decide to voice my truth: others depend on me.

So little of this actually has to do with politics, and more about actually caring for your fellow man. Imagine during this time where we see so much crisis, being able to put someone else’s needs over your own…especially over your wants. It has to do with caring for one another, so that we may all have a future, not just bettering one part of the population.

I’ll step off my political pedestal and leave you with this: I wake up 365 days a year knowing that without advocacy, my life wouldn’t amount to much. This is what I choose to do to serve people. Realizing that I have to keep explaining to others why I matter and why my life is important is one of the most heart-breaking things a patient with chronic medical issues can go through. Feeling meaningless, invisible and worthless in a crowd of millions of people. Please don’t make me explain why my life is valuable.

Want to become more involved in your legislature but not sure where to begin?

Text RESIST to 50409 and ResistBot help you contact your officials – from there it will prompt you to put in your location and find out who your representatives are and how to get in touch with them. Simply compose a text and it will fax that text to them automatically. Just follow the steps.


You can also Visit CCF’s National Council of College Leaders: or

See the full article here: Advocacy & Politics