Lessons From My 'Freshman Year' of Chronic Illness

In September 2020, three weeks after arriving in Leipzig, Germany, I seated myself at my new desk in my new apartment in my new city in a new country, and I was practically given a new identity over a video call with an American geneticist. Ehlers-Danlos syndrome, she confirmed, after I had flexed all of my joints for her over camera, listed off all of my misplaced organs, and described to her my agonizing back pain.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

I never in my life thought I would one day identify as “disabled.” In fact, some of you are likely reading this and thinking, “Disabled? Celina, I know you have health issues, but I wouldn’t say you’re disabled.”

The purpose of the word “disabled” was originally intended to identify people who have chronic limitations outside their control, so that society can learn to better equip these individuals to contribute. But due to society’s ableism, more often than not, the word “disabled” carries a negative connotation.

However, the more time you spend battling society’s standards with an unpredictable body, the more the word sinks in. I am disabled, whether I look like it or not. I say that not because I believe that I am unfit to contribute to society, but because I sometimes have different needs in order to function well in society. Facing that fact with honesty is what has made me all the more able to play my part.

During the last year, I’ve grieved over and over again the normalcy I once had and the normalcy I’ll never have again. I am still grieving the parts of my body that cannot be repaired, and I expect that the cycle of grief won’t end here.

So if you meet someone in your life who stands straight and tall with a smile on their face and a body that looks like yours, I ask you to please withhold your doubt and skepticism if they tell you that they are disabled. It is not an excuse, a special status, another word for “not trying hard enough,” or a plea for attention. It is simply an honest descriptor for the sometimes wholly invisible battles that certain people live through day to day and for the conditions that affect multiple aspects of their life.

So I write to you all in the thick of my illness, encompassed by confusion and anger, in a period of my life in which the majority of my thoughts have been stolen by the state of my health. My diagnosis is still young, but the war with my body feels like it has already lasted a lifetime.

And with that, I want to share with you what having an invisible illness has come to mean to me.

1. Life becomes a battle between taking care of your body and taking care of your mental health.

In the first months after my diagnosis, I went through so many MRIs, did all the research, and prepared myself for every possible comorbidity. I yearned to understand my body better, so that I could figure out how to better show it love. I very soon realized that by taking on such concern for my body, I was losing time that I would have otherwise been devoting to the things in my life that make me happy.

Although spending absurd amounts of time in doctors’ waiting rooms becomes a necessary part of being ill, I’ve learned the importance of limiting doctors’ appointments in order to save my mental health. There are certain wrongs in my body that will never be right. There are certain symptoms that I will just have to continue managing as well as I can, even if I don’t understand them fully. I can keep searching for answers to the unknown… but sometimes the best way to help myself is simply to direct my mind elsewhere and remind myself that I am more than my body’s limitations.

Ehlers-Danlos syndrome requires me to be careful of how I move and use my joints, what I eat, and how I structure my every day. But if I live every day trying to be absolutely perfect, never putting any stress on my joints and only eating foods that are 100% good for me, I will drive myself up a wall. I could very well spend 90 minutes a day going through all of my physical therapy exercises… but I don’t, not because I don’t want to help myself as much as I can, but because there are other parts of myself that need to be helped. I am more than just a disabled body.

I believe the best management of chronic illness is one that paces itself: a management that maintains hope for the future while accepting that our bodies are disabled in a way that is beyond our control, a management that values who we are beyond our bodies, a management that sees the importance of a healing that is more than just physical. When you have to manage all of this every single day, you start see-sawing between spending too much or too little energy on your health. If we lean too heavily on one side, we risk forgetting who we are and what we love. If we lean too heavily the other way, we risk a further deterioration of our health. I don’t believe that a perfect balance is even attainable. The see-saw never stays still.

2. It’s difficult to understand chronic illness until you’ve experienced it yourself.

It is not easy to understand chronic illness in a society that puts infinite value on finding solutions to problems. It is even more difficult to understand disabilities that are entirely invisible. I will readily admit to how little I understood invisible illness before experiencing it myself. I watched my disabled peers on social media — the ones who looked and acted like all the rest of us — and couldn’t quite understand their efforts to advocate for themselves in this fast-paced society that leaves such little room for those who aren’t built as fast.

“Why are they complaining so much?” I thought to myself. “Doesn’t everyone have problems?” I was so caught up in the very American “life is what you make it,” and “you can do anything if you set your mind to it” individualist mindset that I grew up with. The idea that those people who looked just as healthy and functional as me could have something such a huge extra weight to carry around every day was beyond my narrow-minded comprehension.

It wasn’t until I moved into a new flat in Toulouse, France, before I was ill myself, that I began to understand just how enormous the weight of invisible illness was. My French roommate, Priscille, has cystic fibrosis, a life-threatening and debilitating genetic disease. I gradually began to comprehend just how much this illness affected every aspect of her life, and why such a condition demanded so many accommodations. The word “tired” meant something much different for me than it did for her.

Priscille is still one of the strongest souls I have ever met. And yet, most of us with chronic illnesses get tired of being strong all the time. When chronic illness knocked on our doors, the only two options were strength or death. Resilience was just another part of the package deal that was handed to us unwillingly.

3. Society forces a double standard onto disabled people.

If you are not doing everything in your power to manage your condition well, society’s message to you is that you are lazy and careless. But if you are, you are hyperfixating on your problems and obsessing over your illness. That’s where this “perfect balance” comes in. No one is perfect, and yet disabled people with invisible illnesses are expected to blend in and make meaningful contributions to the world, all the while holding up unpredictable and dysfunctional bodies.

I can’t tell you how many times I’ve had people ask me if I’m “better yet.” There is a sense of personal guilt that accompanies having to explain that more often than not, I feel just as bad as I did yesterday. My life revolves around managing a chronic condition, not healing an acute one. I have to remind myself that I am not being negative or burdensome by not being able to give others the success story that they want to hear. I am simply being real. Being real and also maintaining positivity is the challenge we face.

On that note, “Oh, I know exactly how to cure that,” is one of my least favorite phrases. Unless I am staring into the eyes of Jesus Christ, I am skeptical of anyone who thinks they can take away seven years of severe gastrointestinal issues just like that. Call me a pessimist. Tell me I need to be more hopeful. But when you withstand seven years of being let down over and over again, doing everything in your power and still degenerating, hope takes on different methods and meanings. Instead of hoping for a miraculous cure, you start hoping for something that allows you a better quality of life tomorrow than today.

4. Even though the condition is chronic, every day is different.

The mental battle against unpredictability has become one of my personal biggest challenges. My ability to plan has gone out the window. There are good days, there are bad days, and there are in-between days. Sometimes, I start to feel like I can predict the good and the bad a bit better, and then all of a sudden the worst of the worst sneaks up from out of nowhere, and I realize I actually have very little control over my life.

On my best days, I feel strong and capable. I even forget that I am disabled. But when these rare days do occur, I start to gaslight myself and question the excruciating pain I felt the day before. Am I really so sick? Am I really in so much pain? Maybe this is all in my head? Maybe I’m exaggerating? Give it a few hours, and I am quickly reminded that I was never exaggerating.

This rollercoaster isn’t just physical. It’s emotional too. Some days, I believe I have it all figured out; I feel at peace with myself and the limitations of my body. The next day, I’m back to grieving the normalcy that my life does not have and probably never will.

5. We need support.

There is only one person living in my body. Normally, your body is supposed to support you to live your day according to your wants and needs. Most of the time, I’m not sure if my body and I are even on the same team or speaking the same language. And if I can’t get support from my body, I need even more support from outside my body. That is a fact of survival.

I don’t want to talk about my health all the time, and I am constantly fighting to be more than my illness, but in this period of my life, my illness still takes up most of my time and energy. So, it means a lot to me when someone Googles my condition or asks me about what I’m going through. It shows a lot of courage to step into unknown territory. Fear of these discussions is what keeps disabled people in the dark. It’s what continues an unhealthy and inaccurate black and white image that labels and divides “sick people” and “healthy people” without any understanding of individual illnesses and all the intricacies that exist in between.

Everyone has their own reality and their own battles. But some people’s battles are lifelong. Some problems don’t have solutions. I don’t claim to have suffered any more than anyone else, and there is no worth in pointing fingers and asking, “Who has suffered more?” But there is worth in taking the time to understand that not everyone’s experience of “suffering” is the same. Not everyone finds the same meaning in the words “pain,” “tired,” and “sick.”

Personally, I am enormously blessed to have so many people in my life who have given me the space to be real and honest. These wonderful people have shown support and proved that they won’t retract it if I don’t get better tomorrow. Chronic illness is exhausting, and I can only hope and pray that others battling chronic conditions also find this level of support in their lives. The mental and physical weight of a dysfunctional body is far too heavy for any one person to carry alone through this life.