Chronically Misunderstood: The Pros and Cons of Illness

There are actually some upsides to being ill. Yes, I know that sounds absolutely crazy, but it’s true:

  • Because of my illnesses, I am a stronger person. I have a fortitude and inner strength that many people don’t have … simply because they don’t have to. My husband is a personal trainer, fitness fanatic, and an American Ninja Warrior competitor. He’s very physically strong, but I have overheard him tell people that, in some (obviously different) ways, I am stronger than he could ever be.
  • Becuase of my illnesses, I believe that I am more selfless, and more attuned to the plights of others. I believe that as I’ve grown older, I’ve become more compassionate and empathetic. I credit a part of this to maturity, a part of it to the strengthening of my faith, but most of it to the fact that I deal with struggles and challenges myself, and so I can’t help but to relate and have a new understanding and shifted perspective when I see others suffering. I wasn’t always this way. In my younger years, I could be self-centered and, although always kind, maybe not quite as empathetic as I am now. I am thankful that I have grown in this area, even if health problems were part of the catalyst for this growth. I sometimes wish others were more sympathetic, empathetic, compassionate, and selfless — without having to go through adversity to get there. This world needs love now more than ever. 
  • Because of my illnesses, I’ve gotten great opportunities to help, inspire, and educate other people. I’ve always had a heart for helping others, and a desire to use my voice, speak out, and be heard (I’m a writer, after all!) but now I really have a cause to authentically rally behind — a cause that I truly care about. I think that the emotional complexity of living with incurable diseases and physical limitations (both of which can be life-altering) has given me a unique perspective from which to write and has deepened my well of emotion to draw upon when writing both fiction and nonfiction work. My health struggles have threaded through my writing career  in ways both direct and indirect, and of course have given me many opportunities to be an advocate and an activist for health-related causes that I care about.
  • Because of my illnesses, I’ve become hyper-aware of the value of health and the precious gift of life. I can’t say this enough. I now understand that health really is the ultimate wealth. I am so grateful for my good days, and, furthermore, am so grateful for every breath I take. I would do anything to feel good all the time, but it isn’t my reality. That said, if I won the Powerball or the Mega-Millions, what I would do with the money would be very different than most. Taking care of the temple that is my body would be very much prioritized over luxury cars and jewelry. (So would donating to important health charities and medical research foundations, or helping others with medical bills.) Even as someone who is definitively not a multi-millionaire, even now  I am okay with spending money on things that might even remotely help me feel better. I know that, while I love a good designer handbag or some nice luxury eyewear, my health is number one. I can’t help others without being at my personal best. I can’t give love without loving myself first — and that includes loving my body, even when it seems to hate me. Even when I want to give up, I know that this life is my greatest gift, and I will live it to the fullest. In order to do so I have to take care of myself as best I can, even if that sometimes means sacrificing “fun” things (like cupcakes and Zumba) and spending time and money are more “boring” things (like physical therapy and immunobiologic infusions.) After all, at the end of the day, we have two choices: get bitter, or get better. And I definitely want to be better, not bitter.

But illness is undeniably difficult at times. There is a general sense of feeling chronically misunderstood… and sometimes “left out.”

It can also be very isolating when no one really understands what you are going though on a daily basis.

I often feel like the odd man out, as I watch life go on around me… and sometimes, without me.

Last week, I went to watch my husband do indoor rock climbing with dozens of other people and slowly realized that I the only non-participatory person there who was not an employee. Last weekend at the mall, I watched other women walk around, carrying multiple bags, not a care in the world, when I was having trouble simply walking while not carrying anything besides my purse. Often, I will hear friends of mine excitedly talk about signing up for a race or a new exercise class like it’s nothing, knowing there’s no way on God’s green earth that I could do it. (And these conversations always end with, “you should do it!” or “let’s sign up!”)

Ah, and then, there’s the ever-present question of “so, do you have kids?” or “when are you guys having kids?” as though it’s the most simple inquiry and the most simple act. For me, it’s not really a question of fertility, but the fact that I live with a unpredictable illness that is extremely difficult on my body and can affect not just my mobility and strength, but also my organs, my immune system, and more. It is about being physically able to safely carry a child for nine months, and then, being able to care for them for the next 18+ years.

Yet it isn’t just serious stuff like that: even something as innocuous as joining my husband at one of his students’ birthday parties at a trampoline park this past weekend and being asked three times why I’m not jumping, or if I’m going to jump, was a bit uncomfortable.

None of this is offensive in any way. I’m not being bitter, or whiny, sensitive or overreacting: it’s just  my reality and I’m sure the reality of many others.

It doesn’t hurt my feelings, but it is sometimes awkward and isolating.

Here’s how I can explain it best:

People don’t think twice about things that, for me, are a very big deal, or a very major decision. It seems that people are moving forward with their lives, and I’m stuck in this place of sickness.

theater_masksIt’s like when an actor becomes known for one particular role and can never move past it.  I’ve been typecast (by God, or the Universe, or whoever,) in my own life as the chronically ill girl, the Sick Idiot with never-ending health problems. I’ve tried to break out of this role many times — and have nearly done so successfully, on occasion — but no matter how many other roles I audition for or parts I land, it always comes back to this. And I don’t even get an Oscar for it.

I’m hoping that this role may someday change, but for now, sickness and pain seem to be my constant companions — and so I’m focusing on those upsides.

How do you stay focused on the good, in the midst of all the bad?


One thought on “Chronically Misunderstood: The Pros and Cons of Illness

  1. So true did not know I could not bowl till I tried to bowl but wrist was frozen. Now I do not go to any activities that I do. UGH I too did not have children about 30 you really want one. Hard on body before and after birth. All my friends had children and moved on. Not me world doesn’t change much.LOL

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