If I've said, "don't worry, I'm fine" once, I've probably said it a million times. I said this when I first began having symptoms of Crohn's disease all the way back in 2006 while I was serving in Afghanistan. I said it again when I was finally diagnosed with the disease. I said it again when working became very difficult for me because I couldn't leave my house. I kept saying it until it became abundantly clear that I was definitely NOT fine. I'm like most people with a chronic illness. We don't want anyone to worry about us so we just say that we're fine and move on. Actually, I wanted to believe I was fine. I've been toxically positive and optimistic since day 1 of my diagnosis. Can't get to work? No problem. I'll start a business so I can work from home in the mornings. Crohn's has gotten too bad for me to continue competing in triathlons? Don't worry, the doctors will figure this out and I'll be training for that next 70.3 or marathon before you know it. (more on this story in a later blog, boy did I cause a scene at Walter Reed) It wasn't until I started having the reaction to my Humira that I began to break. Not at first of course. When I first started having the reaction, I thought I was in overtraining syndrome. I kept going to doctors but when they found nothing, I blamed myself. "I must be training too hard, I need more time off, I didn't analyze my run well." A little bit of efficacy is good for everyone but let's be honest, it wasn't my fault and I needed to knock it off. In early 2021, it became clear that my neuromuscular issues and other symptoms were definitely not my fault when overnight I stopped being able to run at all. It became clear to me that these doctors had been misdiagnosing me as I continued to decline and starting having mood swings and suicidal thoughts to go with my rash, muscle myalgia, fatigue, and shortness of breath. This is when I finally recognized that I was decidedly not fine. It's also when I finally broke down and said the "D" word. Disabled. I've never wanted to admit that I'm disabled. What does disabled even mean? The dictionary definition of disabled is-(of a person) having a physical or mental condition that limits movements, senses, or activities. I clearly have met that definition for years but why was it so hard to admit to myself? Why was it so hard to say out loud? I've had a plenty of time to reflect on why it took me nearly 10 years after my diagnosis to admit that I'm disabled. The truth is, I don't want to be disabled and I believed that if I never said the word or never thought about disability, then it wouldn't be true. I thought if I told everyone that I'm fine, then I would be. Obviously that did not work and I'm certain my mental health suffered for this delusion. I'm not alone. Chronically ill patients often tell everyone they are fine when they aren't. We don't want to impose our struggles on our loved ones. We also don't want to speak it into existence, if a person admits they are not ok does that in turn make them not ok? Well, I wasn't a philosophy major but I do know that most of my fellow chronic warriors are just as scared as I am to tell people they are not fine. There is also very little understanding of disability among acquaintances, family, friends, co-workers, and even the disabled themselves. I've spent a good amount of time on Reddit debating the question, am I disabled? Many people think of the disabled as in wheelchairs or missing limbs. It's hard to think of myself as disabled when sometimes I feel well enough to look and behave like a completely normal person. The second question we all love to debate on Reddit, do I admit being disabled when applying for a job? Obviously if you're accepting employment, you have to disclose your illness. Trust me, there is going to be a time when I can't make it to the office. It's best we get this out of the way as soon as possible so no one is surprised when I'm trying to work from home everyday for a couple of weeks. The question no one is comfortable with is, do I admit it when applying? I admit, that "are you considered disabled" is a loaded question that fills me with anxiety. If I admit this, do they immediately eliminate me as a possible job candidate? If I don't admit it, will they view my application as a false statement once I come clean about my disability? You see, if we say that we're just fine, then we don't have to worry about whether or not you'll accept us for employment, friendship, love, or even as a regular person. I've been excluded from activities or more work many times because someone is worried I'm just too sick and they don't want to bother me more times than I'd like to admit and certainly more than I can write about without crying. You see, I'm not fine. I'm disabled. I need accommodation so I can join you on the girls trip, help you buy a house (I'm a realtor), accept employment at your business. This is what I've learned after 10 years. Say it loud, say it proud. I'm disabled! If you provide me with an accommodation, I can do anything you can. So please don't exclude me or worry my sickness will get in the way. I've finally stopped worrying about that myself...now that I've spoken my disability into existence. The truth was difficult to admit and I know many chronically ill patients are struggling with the same doubts and fears. Just treat us like normal and ask if we need accommodation. If you provide us those two things, then you don't have to worry, I really am fine.
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