chronic illness doubts

Illustration by Brittany England

Health and wellness touch each of us differently. This is one person’s story.

It’s been 10 years since a slew of still unexplained symptoms invaded my life. It’s been 4 1/2 years since I woke up with a headache that hasn’t ever gone away.

In recent months, I’ve become increasingly sick — all of my symptoms attacking at once and new symptoms appearing what seems like daily sometimes.

For now, my doctors have settled on new daily persistent headache and ME/CFS as tentative diagnoses. My team of doctors are still running tests. We’re both still searching for answers.

At 29 years old, I have spent almost a third of my life chronically ill.

I can’t remember what it was like before — to not feel some combination of these symptoms on any given day.

I live in a state that’s equal parts cautious optimism and hopelessness.

Optimism that answers are still out there, and a sense of acceptance that, for now, this is what I have to work with and I will do my best to make it work.

And yet, even after all these years of living and coping with chronic illness, sometimes I can’t help but let the strong fingers of self-doubt reach in and take hold of me.

Here are some of the doubts I continually wrestle with when it comes to how my chronic illness affects my life:

1. Am I sick or just lazy?

When you’re sick all the time, it’s difficult to get things done. Sometimes, it takes all of my energy just to get through the day — to do the bare minimum — like get out of bed and take a shower, do laundry, or put the dishes away.

Sometimes, I can’t even do that.

My fatigue has had a profound effect on my sense of value as a productive member of my household and society.

I’ve always defined myself by the writing I put out into the world. When my writing slows, or comes to a halt, it makes me question everything.

Sometimes, I worry that I’m just straight-up lazy.

Writer Esme Weijan Wang put it best in her article for Elle, writing, “My deep fear is that I’m secretly slothful and am using chronic illness to disguise the sick rot of laziness within myself.”

I feel this all the time. Because if I really wanted to work, wouldn’t I just make myself do it? I would just try harder and find a way. Right?

People on the outside seem to wonder the same thing. A family member has even said things to me like “I think you’d feel better if you just got a little more physical activity” or “I just wish you wouldn’t lay around all day.”

When any kind of physical activity, even just standing for long periods of time, causes my symptoms to spike uncontrollably, it’s hard to hear these requests that lack empathy.

Deep down, I know that I’m not lazy. I know that I do as much as I can — what my body allows me to do — and that my whole life is a balancing act of trying to be productive, but not overdo it and pay with exacerbated symptoms later. I’m an expert tightrope walker.

I also know that it’s hard for people who don’t have these same limited energy stores to know what it’s like for me. So, I have to have grace for myself, and for them as well.

2. Is it all in my head?

The hardest thing about a mystery illness is that I find myself doubting whether or not it’s real. I know the symptoms I’m experiencing are real. I know how my illness affects my daily life.

At the end of the day, I have to believe in myself and what I’m experiencing.

But when nobody can tell me exactly what’s wrong with me, it’s hard not to question if there’s a difference between my reality and actual reality. It doesn’t help that I don’t “look sick.” It makes it hard for people — even doctors, sometimes — to accept the severity of my illness.

There are no easy answers to my symptoms, but that doesn’t make my chronic illness any less serious or life-altering.

Clinical psychologist Elvira Aletta shared with PsychCentral that she tells her patients that they just need to trust themselves. She writes: “You are not crazy. Physicians have referred many people to me before they had a diagnosis, even doctors who don’t know what else to do for their patients. ALL of them eventually received a medical diagnosis. That’s right. All of them.”

At the end of the day, I have to believe in myself and what I’m experiencing.

3. Are people tired of me?

Sometimes I wonder if the people in my life — those who try so hard to love and support me through all of this — ever just get tired of me.

Heck, I get tired of all of this. They have to be.

I haven’t been as reliable as I was before my illness. I flake out and turn down opportunities to spend time with the people I love, because sometimes I just can’t handle it. That unreliability has to get old for them, too.

Being in relationships with other people is hard work no matter how healthy you are. But the benefits always outweigh the frustrations.

Chronic pain therapists Patti Koblewski and Larry Lynch explained in a blog post: “We need to be connected to others — don’t try to fight your pain alone.”

I need to trust that the people around me, who I know love and support me, are in it for the long haul. I need them to be.

4. Should I be doing more to fix it?

I’m not a doctor. So, I’ve accepted that I’m simply not capable of wholly fixing myself without the help and expertise of others.

Still, when I wait months between appointments and am still no closer to any kind of formal diagnosis, I wonder if I’m doing enough to get well.

On the one hand, I think I have to accept that there really is only so much I can do. I can try to live a healthy lifestyle and do what I can to work with my symptoms to have a full life.

I also need to trust that the doctors and medical professionals I work with do have my best interest at heart and that we can continue to work together to figure out exactly what’s going on inside my body.

On the other hand, I have to continue to advocate for myself and my health in a complex and frustrating healthcare system.

I take an active role in my health by planning goals for doctor’s visits, practicing self-care, like writing, and protecting my mental health by showing myself self-compassion.

5. Am I enough?

This is perhaps the most difficult question I wrestle with.

Is this sick version of me — this person I never planned to be — enough?

Do I matter? Is there meaning in my life when it’s not the life I wanted or planned for myself?

These aren’t easy questions to answer. But I think I have to start with a change in perspective.

My illness has affected many aspects of my life but it hasn’t made me any less “me.”

In their post, Koblewski and Lynch suggest that it’s okay to “Grieve the loss of your former self; accept that some things have changed and embrace the ability to create a new vision for your future.”

It’s true. I’m not who I was 5 or 10 years ago. And I’m not who I thought I was going to be today.

But I’m still here, living every day, learning and growing, loving those around me.

I have to stop thinking that my value is based solely on what I can or cannot do, and realize that my value is inherent in just being who I am and who I continue to strive to be.

My illness has affected many aspects of my life but it hasn’t made me any less “me.”

It’s time I start realizing that being me is actually the greatest gift I have.


Stephanie Harper is a writer of fiction, nonfiction, and poetry currently living with chronic illness. She loves traveling, adding to her large book collection, and dog-sitting. She currently lives in Colorado. See more of her writing her at www.stephanie-harper.com.