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How Accepting the Chronic Nature of My Illness Gave Me My Life Back

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Before last week I thought of myself as a “healthy person going through a temporary phase of illness,” and I thought that was a good thing. I thought I was staying positive and not allowing this illness to become my identity, but what I didn’t realize is that I was undermining my own happiness in the process. But Nicole, what do you mean? Aren’t we supposed to “stay optimistic” and all that jazz?

Yes, by all means, be optimistic. I’m an eternal optimist; however, I’m also a realist and I was existing in denial. The day I decided to alter how I viewed myself, things began to shift for the better.

Let’s take a step back. I’m 35 years old, single with no kids and have been repeatedly exposed to toxic mold over the past 17 years without my knowledge, each time making me very ill for months to years at a time. I call these my “down cycles.” The doctors had no idea what was wrong with me. I began getting sick my first week of college and didn’t think much of it until I became so sick that I had to drop out of school. The doctors told me, “You’re too young to be this sick!” and off I would go, back to my bed for another year of agony with no answers. Seemingly sporadically I’d get better – like almost completely better, besides some insomnia and fatigue – but again, I didn’t think much of it since I was in my 20s.

I went through three more “down cycles” from ages 18-30, and am in my worst one yet. I’ve spent 12 of the last 17 years sick in bed and yet I still think of myself as a healthy person going through a temporary phase of illness. Who am I kidding, though? I have a chronic illness with temporary phases of health, not the other way around.

This last time when the down cycle hit, I nearly died. You may know what this is like. I spent three years feeling my body die, bit by bit, day by day until I was on my deathbed, in a very prestigious hospital with doctors telling me all my tests were normal and it was all in my head. I almost believed them because it was the easy way out after so many years of not knowing – any diagnosis is better than none. Until my best friend, who was looking after my doggies while I was in the hospital, went to change my A/C filter and found toxic mold covering most of my A/C coil. This is when everything fell into place and through lots of research, blood tests, advanced MRIs and an open-minded doctor, I figured out and got a definitive diagnosis for chronic inflammatory response syndrome (a.k.a. CIRS, mold illness, biotoxin illness, mycotoxicosis).

By overlaying the timelines from my periods of illness to the places I lived, I created an exact match for every time I got sick and then sporadically healthy; the places I was living in were making me sick. After I moved in, symptoms would appear within a week, and within a few weeks of moving out, I was back to almost normal (each time less and less normal and more and more sick). Since then, I’ve been doing everything possible to get better, but no matter how far I come, the smallest thing puts me right back to the brink of death, showing me just how fragile I still am.

This time, I’ve been down for three years already and have who knows how many years ahead of me before I can live a semi-normal life. Because I’ve been looking at myself as if I’m a healthy person going through a temporary phase of illness, I stopped pursuing relationships, thinking that there will be time in the future for them. I stopped buying clothing because I’ve gained 50 pounds from being so sick and bedridden and didn’t want to accept myself this way, holding on to my size two clothing for “when I’m better.” I stopped trying to go out with friends because it’s easier to stay home. “There will be time soon to do those things,” I thought. I stopped doing so many things that make up normal life that I actually stopped living and began to merely exist instead. Can you relate?

Last week, I decided to change. Last week, I decided to take back my life by letting go of my life before my chronic illness. Last week, I looked at myself in the mirror and said, “Hello, self,” instead of “Hello, temporary version of myself.” I gave myself permission to live again, not just exist, so that I may thrive, even with this debilitating chronic illness.

In the spirit of getting back to life, I even tried to log into POF for the first time in two years and found that they deleted my profile due to inactivity. Talk about a wake-up call. How had I been offline for so long that they straight up deleted my profile? The process of creating a brand-new profile as the person I am today, a chronically ill person with temporary phases of health, was hard, nerve-wracking but also so very freeing. Using recent photos, all taken in my bed (since that’s where I exist), with my doggies and with my current body, 50 pounds heavier, mostly with no make-up and unwashed hair, made me almost give up and delete the whole thing out of fear.

woman smiling and lying in bed with her dog

For why would anyone choose someone who is chronically ill and overweight? What made me think I had the right to even ask someone to love me in my current condition? And then I reminded myself that it’s now or never, and who am I to deny others the choice to love me? And so, I published my profile on POF in all its chronically ill glory. Waiting with my cell phone in my hands, eyes fixed and breath abated, I waited for a sign, any sign – should I put myself out of my misery and delete my profile or was this a good thing? And then something wonderful happened. I started getting messages – like, a lot of messages. (This isn’t about basing your worth on the actions of others, this is about freeing yourself from the imaginary prison we put ourselves in because we don’t think we are deserving.)

Do you know what I learned from POF? That I still matter. That, for me, there is still hope for love. That it is OK for me to do more than merely exist, for I get to live life too, even if I am chronically ill with temporary phases of health.

The day I let go of my life before chronic illness and embraced my life with chronic illness, I gave myself permission to stop merely existing and begin living again.

I’ll let you know how it turns out, but today, I’m happy just being me. Not a temporary version of my previous self – just me.

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Originally published: May 10, 2017
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