I remember my mom and dad sitting in the front seat of the car with my mom trying to hold back tears because she didn't want to say it, but when the doctor said in front of us that given my blood work, I might have Lupus, she was scared out of her mind. Her sister had died of the disease some years ago before I was even born, and the irony would be that, now, as her namesake, I would potentially also have Lupus.
I didn't know what was wrong with me. My joints in my elbows and wrists were on fire, my legs would swell every other day, my hair was falling out in patches, I was exhausted, and I was getting what I thought was food poisoning on a more and more frequent basis. All the symptoms would be super intense for a while and then seemingly fade away, but each time they came back, it seemed to be worse and worse. Everyone was trying to reassure me that it was nothing, or some random bug, or even early onset arthritis. I'd gone through rounds and rounds of doctors and so many blood tests, but none seemed to really have an answer for me until the day the anvil dropped.
I had Crohn's disease. If you're reading that and you have no clue what that is, neither did I at the time. I'd never heard of it, but turns out Crohns is a chronic inflammatory bowel disease (IBD) characterized by inflammation of the digestive, or gastrointestinal (GI) tract. The news only got worse from there, because to date, there is no known cause, no known cure, and it is a life long illness that most people (and I'm most people) will have periods of remission where they are symptom free, followed by flares that can last days, weeks, or months where the disease is in full effect. And the news kept getting worse from there because the symptoms generally include frequent recurring diarrhea, vomiting, rectal bleeding, unexplained weight loss, fever, abdominal pain and cramping, dietary deficiencies, fatigue and a feeling of low energy, reduced appetite, anemia, joint pain, eye disorders, swelling of the abdomen, hair loss, skin rashes, fissures, and intestinal obstructions.
You want to know what it's like? You try explaining to your friends and family that you're bleeding from your rectum and have frequent diarrhea which is why you're always sick. It's part of the embarrassment and shame that goes along with this disease because you can't openly talk about it like you can with like diabetes, where people are generally open and receptive about it and want to know more. No one wants to hear about your diarrhea...no one.
This is the point where I toss up the middle finger to anyone who is like, "oh, but you need to be positive about this," or "look at the bright side." Really? And where would that bright side be in all of that description I wonder if it were you? This has all been a struggle for years now to say the least. I've had to give up a lot of foods because they cause me a lot of pain and discomfort to eat them, and at times, I just stop eating altogether when I'm out of remission just to try and avoid anything interacting with my gut even though the symptoms still come no matter what. Even something that's supposed to help you, such as an intense workout can potentially trigger symptoms.
At times it has made it absolutely impossible to work a 9-5, and in fact, after my diagnosis, I had to quit my job because I was so sick all the time battling the bathroom 9-12 times A DAY. I was also dealing with severe anemia and the intense joint pains. I could barely function, let alone attempt to be productive at a job. I ended up starting my own business just so I could work from home and be close to a bathroom and have flexible hours.
Crohns really killed my social life when I was not in remission because I couldn't go anywhere without a bathroom like right next to me, and since I've never been one to like going number 2 in a public bathroom, I was not a fan. It was so hard to explain this to friends especially why I had to pop to the bathroom every second or would be so sick sometimes, so I just stopped trying to socialize and became very isolated and depressed. I went from a very nice social life, to maybe seeing a friend once every 3 months, and dating, are you kidding me,...forget about it! I had no energy at all and I felt like crap...quite literally...almost every day.
There are so many people around the world that live with any number of chronic life long diseases. Our best days are sometimes those when we can get up, get dressed, and just go sit outside in the sunshine if we can manage. We get told all the time, we're making up excuses, or we're not that sick because we don't look it, or cheer up, and it can be the most frustrating thing because you want more than anything to be normal, and not deal with medications and loads of pills (which I must take every single day in or out of remission), or the pain you feel, or any number of side effects that happen with their disease.
I would implore anyone reading this, if you know someone in your life who deals with chronic illness, to let them share their experience with you and to let yourself be educated by them, because I do believe it makes those people our allies and our advocates rather than sources of distress or the faces of ignorance. We struggle a lot and it can be very isolating for some, but to have someone in our corner, even if they just listen, can make all the difference in the world.
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