No Really, I Am Sick
Having a chronic illness is hard. It's exhausting battling with my Crohn's day after day, and it's frustrating and stressful dealing with those who just don't understand or don't believe what they cannot see. Just because I "look" fine doesn't mean my body isn't beating itself up on the inside. I just became very, very good at hiding it.
When my Crohn's symptoms aren't visible, they're still real
At the height of my disease, it was quite obvious that I was sick as I had lost around 60 pounds (27 kg/4 stone). I missed a lot or work, to the point of losing my job. I was in and out of hospital, and had multiple surgeries.
But it was the times when I looked "normal" where it wasn't so obvious – and people didn't believe I was sick. Employers, coworkers, friends, family, and even medical professionals just didn't believe that, even though I looked fine, I was in a battle. Fighting the disease on the inside.
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View all responsesEmployers who don't understand that Crohn's and UC are unpredictable
Many times, I would look fine one day and be sick the next. To the point where I was calling in sick from work. I have held many jobs through my Crohn's journey, and none of them were what I wanted to do before getting sick, but I always told employers about my illness at the time of hiring. And I recommend everyone do so when looking for work. Maybe they didn't understand what that meant.
One employer once asked me how I could possibly be sick all the time and doubted that I was telling the truth, even though I told them about the disease and its unpredictability. I tried to explain that it wasn't me that was unreliable, it was my disease.
I even tried suing an employer once for wrongful dismissal (illness), but the company went out of business before it could go to court. It was – and is – frustrating that I want to work but I can't many times. Of course, this leads to stress, which aggravates the disease. Causing it to worsen and thus the vicious cycle we all understand.
When doctors don't believe symptoms are real
Frustratingly, and probably one of the most stressful things about Crohn's and ulcerative colitis, is when medical professionals don’t believe you’re sick. Or they don't believe the symptoms you're trying to explain to them.
I know what I am feeling is real. I am there looking for help, don't tell me I'm wrong. Or even worse, the eye roll. When trying to get a diagnosis in the beginning, a few doctors didn't believe my symptoms could possibly be giving me this much pain and drastic weight loss. One doctor even thought it was all in my head.
I am trying to explain what's going on and I have no idea why, don’t belittle me, I'm not stupid. It's hard enough and scary when all these symptoms come up suddenly (for me), especially when I rarely got sick and was healthy and athletic. It was the 6th doctor I saw that listened to my symptoms and figured it out.
When friends and family question you
The most disheartening is when friends and family don't believe you. While I understand it can probably be frustrating for them as well, maybe because they don't know what to do or say. But I thought they would at least be more understanding – above everyone else in my life. But not always.
As many of us can probably relate, I lost many friends in the beginning. But again, I was at my worst, and I get it. But when I looked fine, they seem to think the disease magically went away and didn't understand why I couldn't do things or go out. Or even just get out of bed sometimes.
Trying to "prove" our illness is too draining
It was, and is, emotionally draining at times having to explain over and over again that most of the time I have no control over the disease and it does what it wants, when it wants. No one knows why. Sure, there are things I can do to minimize the pain and flares, but even that is no guarantee that it won't just pop up the next day or even the next hour.
I don't even tell the truth anymore when someone asks, "How are you?" My response is always "fine." One thing is for sure, you will find out very quickly who your friends really are.
Your illness is real. Your pain is valid.
There is not much you can do when it comes to employers, medical professionals, and the ones around us to believe we really are sick even though they can’t see it for themselves. Many would complain that I would be faking being sick to get out of work or social situations, etc. But in reality, I would be faking being well. I have lost count how many times I would dig my nails into the palms of my hands during flares pretending to be "fine."
You are not unreliable, your illness is.
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