Not Sick Enough: When Your Chronic Illness Leaves You Halfway Between Sick & Healthy

Before I dive into this post, I want to tell you that it has been sitting in my drafts for a few months. I wrote in it the early summer, when I was feeling “not sick enough.” Ironically, before I could post it, a massive flare hit me in August and I thought to myself, “well there’s no way I’m posting this now! Now I definitely feel sick, so that post doesn’t resonate anymore.” But, alas, here I am today feeling pretty good again. Autoimmune diseases fluctuate! Every time I’m in a flare I will feel sick, and when I’m not in a flare, I may have bouts of feeling “not sick enough,” and I’ve realized that my feelings when I wrote this post are valid whether I’m currently feeling them or not.

Questioning Myself & My Illness

If I post a picture of myself doing something healthy people would do, will people think I’m faking being sick?

Am I still a legit part of the chronic illness community if I can leave the house most days? And hold down a job? And exercise?

Will disability services grant me accommodations for my internship? Will they believe that I really need them?

What if I can never work enough hours to support myself financially? Will I have to file for disability? Will they think I’m “disabled enough” to need help?

All thoughts that have popped into my head at some point or other regarding my chronic illness – Sjogren’s Syndrome. Sjogren’s is an autoimmune disease (which is when the body attacks its own healthy cells), and for me, results in dry eyes and mouth, fatigue, and getting sick with acute illnesses a lot. And here’s the thing about autoimmune diseases: they flare. Their symptoms will worsen for a time, and then go into remission and get better (or go away) for a time.

During these periods of remission, I sometimes half convince myself that I’m better, or maybe even “cured.” I think that this will be the time the symptoms won’t return…but it never is. And during these periods when my symptoms have subsided, I start to question whether I’m even really sick (which I realize is totally absurd, but its how my brain works). Because if I’ve convinced myself that I’m cured, then of course the next step is to wonder whether I was ever really sick at all.

*Spoiler alert: I am sick. Sjogren’s is a chronic illness. It will not ever be “cured.” It will be by my side for my entire life (and likely keep teaching me lessons every step of the way). If you’re interested in learning more about how exactly I received this diagnosis, I have a new video about it that you can watch here:

Feeling Not Sick Enough

As I write this, it’s almost 11 am and I’m sitting in the middle of a bustling cafe, having gone for a walk, gotten showered and dressed, and driven myself here on my day off from work for lunch with my mom and a writing session. So far this week, in addition to working my part-time job, I’ve been to the grocery store, done a few loads of laundry, and otherwise lived my life not unlike a healthy person.

Not all weeks are like this, surely, but my symptoms always tend to be lesser in the warmer months. The further the summer progresses and the longer I feel pretty decent, the more I start to question the validity of my illness (though I logically know that it’s just in remission). I start to feel like a fraud for not working full time, because there are weeks when I feel that I surely could. I start to feel like I’m not sick enough to consider myself chronically ill.

When I start to feel this way, I have to look back and remind myself of the weeks I spent on the couch, exhausted (from Sjogren’s), or in pain (from IBS) and unable to do the things I enjoy as hobbies, let alone go to work. I have to try and learn to be grateful for the healthy days/weeks/months without feeling guilty for not taking on more (because I know the unhealthy days/weeks/month loom on the horizon).

When I was first diagnosed, I questioned the validity of my illness often. I did not present with the dry eyes and mouth that are so typical of Sjogren’s Syndrome (those took about 2 years to appear). My only real symptom was fatigue, which is so subjective and difficult to measure. I didn’t have dryness or joint pain or something super out of the ordinary. I was just tired all the time. And everyone gets tired, right? (Yes, but not this tired Molly. Not this tired).

There is no test for Sjogren’s Syndrome. It’s not like having your throat swabbed and finding out you have strep, or peeing on a stick and finding out you’re pregnant. There’s no hard and fast way to determine if that is the illness you have. It is diagnosed based on a constellation of symptoms and blood labs, which, in my mind, meant they could have gotten it wrong. I may not really be sick at all. (But, as the video above shows, my constellation of symptoms and labs is pretty darn convincing).

Not Sick Enough For Who?

I still struggle with questions like: am I really sick enough to be part of the chronic illness community? Am I really disabled enough to need services? 

I struggle with using the word disabled for myself, and I mentioned in a previous post that I do have able-bodied privilege, and yet I am working with disability services at my college. I struggle with the word because of my own bias of it – I hear “disabled” and I think wheelchairs and handicapped parking spots and oxygen machines and tubes and hospital beds. But a disability is really anything that limits your ability. And Sjogren’s certainly does that for me, as there are times when it renders me useless and couch-bound.

What I remind myself is that this isn’t the disability olympics. No one is (or should be) comparing and judging illnesses and symptoms. All illnesses are different and they all affect people differently as well. So why do I ask myself questions like the ones at the beginning of this post? Who am I trying to prove my illness to? Society? The chronic illness community? Myself?

I’m 23 years old. I’ve been diagnosed with 3 invisible illnesses in the past 4 years. I have had to modify college and my job to fit in with my health. I may have weeks when I feel like my old healthy self, but I have many weeks where I feel far older and sicker than a 23-year-old should. I have a chronic illness, and I do not have to validate that to anyone, including myself.

P.S. I’m now a contributor on The Mighty! It is an online platform for people with physical and/or mental illnesses or disability. You can read my first piece here!

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