If you have depression, mental illness, infertility, lupus, lyme disease, fibromyalgia, chronic fatigue, arthritis, or any other invisible illness I did not list — I am so very sorry. I know what it is like to carry around a weight that most people cannot see. That feeling of being constantly misunderstood, isolated, or angered? I get it. I have been there. And in many weeks like the last, I am still there. But I am fighting for perspective. This is a part of my journey:
It's been about 180 weeks since my health began to decline, and I still don't know what actually is amiss. Chronic, undiagnosed, invisible. I am finding it is not as uncommon as I thought. (well over 100 million in America alone have an invisible illness.)
Doctors have reviewed my negative test results and leaned forward in their chairs to tell me, "Ma'am, there is nothing we can do for you." Some have alluded to me making up the symptoms because they believed I craved the attention. One doctor told me he would "pound anti-depressants" on me during my next visit to help me cope with the frustration of not finding an answer. The pattern has remained the same. They see nothing, so they give up. In my case, the illness and its diagnosis are both hidden.
It makes me feel crazy.
I live in this strange tension of not wanting an illness — and yet hoping for one to be pinpointed so that I could move forward with a treatment plan. So I could feel validated. Oh, to have an answer! A diagnosis! A result of some kind! I have often imagined the relief that would wash over me as I finally learned what the heck has been going on. To me, an answer would somehow prove this is all real. It would legitimatize the symptoms and my constant justifying could then cease. At least that's what I imagine.
This illness crept into my life summer of 2011 and has since bulldozed through my once-neatly-packaged views on God, relationships, purpose, and even myself. It might be invisible in nature, but its effects have greatly impacted me as well as those close to me. My selfish and prideful ways have never been more highlighted than in these 180 weeks or so. I never knew self-pity could taste so gross or that I could be this headstrong in my distorted game of negativity. For something so invisible, such deep issues have surfaced.
Perhaps it sounds nonsensical, but somewhere along the way, I placed myself under the label of "sick girl". In my naiveté, I allowed the lies to grow and confirm the preposterous belief that invisible illness meant invisible girl. I thought I was doing myself and others a favour by isolating my emotions, thoughts, and even physical presence.
Then came Christmas break in Virginia two months ago. I visited my best friends whom I had not seen in about a year and a half. During this trip, my cognitive symptoms experienced a flare up, which means conversation, comprehension, and retaining information expended the little mental energy I did have. In addition was the usual fatigue and chronic body pain which made me feel like I had piggybacked an elephant all night long. I was only beginning to pull out of a long, emotional funk. Just the thought of inviting them into this mess freaked me out.
I sat in the passenger seat as my best friend drove us from lunch when a certain thought riveted me. Maybe I should tell her. Maybe I should tell her what it's really like for me to be sick. I beat myself up for a good while, clenched my hands, and finally mustered up the courage to share. I had predetermined that even my best friends wouldn't really care to know. If they did, wouldn't they have said something first?
It turns out, she did care and has cared. She just needed to be guided into how I felt most days so she could try her best to understand. As people, isn't that what we so desire? To be recognized and embraced even in our mess? Whether it's illness, a job loss, an addiction, death, heartbreak, or whatever else — don't we just long to be assured that we have not been forgotten? That what we experience matters?
Although my best friends have not experienced this for themselves, they have been through plenty of painful situations which have stolen their joy, masked their identity, created feelings of shame and isolation, and kept them from speaking up as well. We have suffered through our silences. What I was told that afternoon meant volumes to me. She completely validated my illness — I was not crazy after all! Following that, she sweetly said, "Erika, I don't love you because of how eloquent or fun or intelligent you are. I love your heart and who you have been all of these years. It doesn't change."
I don't want people to only know me from a distance. I want them to come close. I crave for them to. It has been a painful process to see the lies regarding my worth uprooted and to plant seeds of truth instead. Like I mentioned earlier, just this week I felt misunderstood, isolated, and even angered. When I find myself feeling that way, it is usually because I have not opened myself up to the truth or to the vast graces of God and the way He moves through His people.
Yes, my sinful ways have never been so highlighted as they are now. But neither has the grace of God. The way He extends His love towards me is something I feel I do not deserve. His grace, His gift. The way He tells me I am enough leaves me in awe. He notices my every need and cherishes me more than even the best of friends could. I have never seen this part of His heart more visibly than now. He is whispering,
your illness may be invisible, but you are seen.
And maybe you need to hear that, too. Through your angry days, your hard days, your painful days. Through the blood tests, treatments, medical bills, lost relationships and many "but you don't look sick" comments. Through all of this, you are seen. You have not been forgotten. Your every need is fully known by God, who so desires to empower you with His strength.
May you be open and allow His whispers of truth to fall afresh over your heart. And most of all, may He, the God who created you and your beautiful body, restore you wholly and completely.