To My Loved Ones: I May Look 'Normal' but I'm Still Sick

I am not “normal.”

Now, I know what you may be thinking…Who is normal? We are all unique and special in our own individual ways. Yes, I get that. But when one is referring to chronic disease or illness, I think there actually is a “normal,” and an “abnormal.” And I, in good company with others, fall into the abnormal category.

If there is one single thing that I would like loved ones to understand is that I am just not normal. Something that I find people who are close to me have a difficult time grasping is that I am, in fact, sick. This makes me not a “normal” person in regards to health. This means that I cannot always do typical things. This means that no, I cannot always be held to the same standards as the average person, despite my constant trying and effort to meet these standards.

I do not mean this in a pretentious way at all. I just sometimes want to be recognized (but not labeled) as sick. I want people to know and understand that I have a very real disability, that I have multiple illnesses attacking my entire system at one time. That I feel exhausted 99 percent of the day, despite looking well. Despite looking like a normal, healthy person, I really am ill.

If one were to actually see how I feel on the inside like they can see my appearance, I guarantee that one would hardly believe that the outer shell and the inside consist of the same individual. That’s how drastic and contrasting these two parts of myself present.

I grew up in an environment that was always “go, go go.” Hard work was drilled into me at a young age. I always strived for good grades, and I always wanted to be the best at what I did. My parents are loving, caring parents who always wanted the best for their children, but I always felt this pressure looming over me. It may sound cliché, but the pressure to be perfect has been a trap that I have consistently fell into throughout my 25 years. I set high standards for myself, and expected nothing less than meeting them – there was no falling short.

Imagine that one day, all of what you strive to do gets put on hold. When you were running nine to 10 miles at a time, you could now barely walk without assistance. When you were used to taking as many college courses as you could fit into your schedule, you could barely take any. When you were working in an active job helping kids to ski and sail, you could barely do these activities yourself, let alone help others to do them. Imagine that everything you knew was turned upside down due to illness.

That was my reality, that is still my reality. And I know I am not alone in this. There are many out there who were perfectly healthy before they experienced the wrath of debilitating chronic illness.

And that is just what chronic illness is…Debilitating.

I have come a long way since I first fell ill. But just because I am no longer in a hospital bed, hooked up to IV’s 24/7, or walking everywhere with a walker, does not mean that I am completely better. I have shown improvement, but the pain is still there. I look healthy, but looks are deceiving. And so is chronic illness.

What I want my loved ones to know is that I am a hard worker. I strive to be the best person I can be, and I am never going to let chronic illness stop me. I will do what I have to do to live my life to the best of my ability. However, I need them to know that…I. Am. Still. Sick.

I need them to know that I come home from school or work and lie in bed as tears roll down my cheeks out of exhaustion. My body still has its limits, and sometimes I do not listen to those limits out of fear of disappointing others, and more importantly, fear of disappointing myself. I need to know that they know and understand that I am not well, but that I am still pushing through to get all of this done. I’m working towards my Masters, making some income, attending my appointments, seeing friends so I can pretend to lead a normal life.

Deep down, I know that I cannot really lead a truly normal life. Because deep down I know that I am not normal. And again, by normal, I mean healthy. Deep down, I know that I push myself too hard sometimes even when I feel like I am not pushing myself enough, because I am comparing myself to others.

I would like them to know that it may seem like I do not do as much as everyone else, but for me it is a lot. And what I do now, a part-time job and being a part-time student, sometimes leads to tears and breakdowns driving home. My body pays for every ounce of energy that I put into studying, working, running errands, attending appointments, etc.

Some days I may not even feel the price my body pays until the day after when I near passing out or experience extreme tachycardia and fatigue that leaves me bed-bound. I am doing a lot more than when I first got sick, but that doesn’t mean that my fight is over.

And that is what I would like my loved ones to know.

Just because one does not look sick, or even act sick, does not mean that they are not.

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