What It's Like to Feel Constant Guilt With an Invisible Disability

I live with an invisible disability. A chronic medical condition causing chronic pain. An autoimmune disease called undifferentiated connective tissue disease (UCTD). My rheumatologist described it as having overlapping symptoms of lupus, myositis and rheumatoid arthritis.

On any given day, at any given time, I feel exhausted. Depressed. Angry. Confused. Vulnerable. Fatigued. Pissed. Worn-down. Less-than. Weak.

The emotions fluctuate throughout my day, affecting my activity, my energy, my pain.

But there is one underlying emotion that’s always there. One emotion that serves as the shaky foundation for all the rest.

Guilt.

I’ve never written that before. Never said it out loud. But at the heart of all this medical uncertainty is a constant feeling of guilt.

I feel guilty.

I feel guilty my son is growing up with a mom like me. A mom who can’t walk very fast, kick a soccer ball very long or ride a bike very far. A mom who speaks about difficult topics such as disabled parking placards, communicable diseases and invisible illnesses — and not in a generic, hypothetical way, but in a very real, this-is-our-life kind of way. A mom who, in front of my son, has cried and pulled my hair and hit the couch in agony, because it felt as if my left leg was being turned and twisted, the way you wring out a washcloth. A mom who takes multiple pills each day. So many, in fact, that when Ryan was a toddler, I found him eating his bite-size pieces of cucumbers one-by-one, and swallowing each with a sip of milk. At the time, he told me he was taking his medicine, “Just like you, Mommy.”

I feel guilty.

For not being a better wife. A healthier wife. We have one “date day” a week. One day, when Ryan is in school, and Paul isn’t at his retail job. Yet, many of our “date days” are spent at various doctors’ appointments. Because I can’t drive myself after having multiple vials of blood drawn. Mostly, though, because I’m afraid to go to these appointments alone. I need to see my husband, to know he’s nearby when the mouth of the MRI machine swallows me up.

I feel guilty.

For causing my parents to worry. For adding to their stress. For creating the heartache that comes from seeing your child in pain, and knowing there is nothing you can do. For relying on my parents, still, and using them as my “back-ups.” When Paul is at work, and Ryan and I are home together, if I feel dizzy because I took my pain pill and didn’t eat enough beforehand, I call my parents. To warn them, to let them know I’m feeling slightly off and ask them to please call and check up on us in a few minutes.

I feel guilty.

Who am I to complain? About anything really? I have a healthy son. A healthy husband. Two healthy parents in their 70s. I have medical insurance. Doctors not far from my home. Monthly disability checks. There are others whose lives have been altered by their medical conditions in shocking, utterly life-changing ways. Others with life-threatening diseases. Others with limited, or no, mobility. For the most part, I still look like me. For the most part, I function like me. I’m just in pain.

I feel guilty.

It’s because of me we don’t often go to the movies. It’s because of me we haven’t been to a concert in years. It’s because of me we have extra bills — copayments for doctors’ appointments, for lab tests, for prescriptions. It’s because of me we now drive places we only used to walk to. It’s because of me when we do walk, we walk slowly.

I feel guilty.

I think about the trips I want my husband and I to take with our son. Paul and I went to Maui 20 years ago for our honeymoon. I’d love to return, for Ryan to see a Hawaiian volcano, to marvel at the waterfalls, the luaus, the whales. Paul and I went to Paris almost 15 years ago. How would I manage a transatlantic flight? How would I walk the streets of Paris or climb the steps down to the Metro? But these aren’t “real” problems. Not like other moms who are worried about affording diapers for their sons.

I feel guilty.

The nurse was just doing his job. Asking me to rate my pain on a scale of one to 10. But I don’t like that question, and now I refuse to answer it. After living with pain for nine years, my pain threshold is skewed. My four would most likely be my husband’s nine. And as I told the nurse, what difference does it make?  If it’s time to pick up my son from school, I get in the car and pick him up. If it’s time to put dinner in the oven, I put dinner in the oven, regardless of the bite-my-lip, clench-my-fists, pain in my leg.

I feel guilty.

For needing help. For asking for help. For not being as self-sufficient as I once was. I used to be self-reliant. The woman who taught until two days before Ryan was born. And then went on to have a natural childbirth. The woman who relied on public buses to get back and forth to college, spending four hours a day sitting on public transportation, because I wasn’t going to let my non-car status stop me from being the first in my family to graduate college. And graduate with honors. And without loans. Now, though, I sometimes need help to reach the bowl on the top shelf or the can opener on the bottom shelf.

I feel guilty.

For hanging that very visible, bright blue placard on my rearview mirror. For taking a handicapped parking spot at the public library when no other spot is available. Because I don’t look handicapped. Because I walk unassisted. Because I’m afraid one day, someone will assume I’m cheating the system and accuse me of not really needing it.

I feel guilty.

As if I brought this on myself. As if living with my autoimmune disease is my lifelong punishment for my mistakes, my broken promises, my bad behavior. I did this to myself. And, however illogical, I feel I have no one to blame but me.

I feel guilty.

For feeling guilty. For thinking I could have that much power and that much control. If this was a self-inflicted punishment, then everyone else would always have a painful, lifelong illness. Because everyone has made mistakes. Everyone has moments and decisions they regret and would change.

I feel guilty.

For not just accepting my life as it is now. I became ill almost 10 years ago when my son was 2 years old. Why do I continue to examine the reasons why? Why do I continue to shortchange myself and not acknowledge the strength it takes to admit weakness?