Living with a chronic condition comes with a lot of emotions. It’s incredibly isolating, frustrating, and sometimes leaves you questioning your own body and its experiences.
I live with a condition called ankylosing spondylitis, which is a form of arthritis. It primarily affects the spine and sacroiliac (SI) joints, but it can also affect any part of the body. For me, it affects my SI joints the most.
Ankylosing spondylitis, like many other chronic conditions, is often referred to as “invisible.” While it certainly doesn’t feel that way to me and others living with chronic conditions, symptoms are not necessarily visible to other people and don’t always show up on medical tests and scans.
Living with an invisible chronic condition is a difficult and testing experience, and I have had to confront challenging emotions to ensure my well-being and future health.
As a young person with an invisible chronic condition, I’ve experienced a lot of isolation.
The original diagnosis made me feel lonely, as if I were going through this whole journey alone. No one I knew had the same or a similar diagnosis. I had no one to relate to, and Googling my diagnosis only led to medical content.
When I would tell my friends about my diagnosis, or what was going on with my life, no one seemed to get it. My family didn’t understand it either.
You don’t get it until you get it, I find.
I was no longer able to do the things I used to be able to do with friends, like go out to dinner or a bar. Hikes and certain activities were out of the question as well.
I spent a lot of time at home in bed. I still do. My chronic pain and fatigue mean that I stay at home a lot.
Some days I’m in bed so tired from my chronic fatigue that I can’t even talk with anyone, or I’m in so much pain that typing on my phone is difficult. Those days are even more isolating than just a typical day when I can still FaceTime or text friends.
On days when I am able to go out, I still can’t do the things I used to be able to do, or at least not in the same ways. For example, I can go out to dinner, but I can’t do anything afterward, because just the dinner leaves me in bed for the rest of the night.
I kind of have a rule that I can only do one big thing a day.
Telling this to someone my age who doesn’t have an invisible chronic condition doesn’t seem to work. They don’t get it. They can try to sympathize, but at the end of the day, my friends and family don’t fully understand what I go through.
It’s a very isolating experience, both physically and emotionally.
I have had a ton of medical tests in my 5 years of being chronically ill, and a lot of times, nothing shows up on scans. I know a lot of people can relate to this.
That’s just something that tends to happen all the time with invisible chronic conditions.
I’ll be feeling bad, and when I finally get the test scheduled, or the blood work done, nothing comes back. There are so many symptoms that just go unnoticed by a lot of medical testing.
This makes it so incredibly frustrating to live with and sometimes makes me question if what I’m experiencing is even real. This can have very scary and real consequences, such as self-doubt, anxiety, and dissociation.
I have to remind myself that I know my body best, and if I know there’s something wrong, then something is wrong.
I can’t, and should never, rely on medical tests and doctors to validate my experiences.
A huge part of living with a chronic condition is the research and advocacy I have to do for myself.
Because oftentimes these conditions don’t have as much research dedicated to them, or the research may be outdated or not appropriate to my own situation, I am constantly advocating for what I am feeling and talking with my doctors about it.
Whenever I have a flare or experience a new symptom, I write it down in my medical journal and make sure to discuss it with my doctor whenever I speak with them next. I record how long my flares last and what is bothering me the most during that flare.
I advocate for myself, a lot.
When scans show up normal, I push my doctors for more help. It’s not always easy, and as a shy and anxious person, this is difficult for me. But I remind myself that I know my body best, and I know my health is the most important thing.
I have often asked to be put on different medications and to receive help here and there for other things, like my mental health. I know when I need something because I’ve been living with my illness for long enough that I can tell when something isn’t normal for me.
Advocating for yourself to your doctors is so important. You’re the only person who truly knows what it’s like to live in your body, and when it’s an invisible chronic condition, things can be missed by doctors and common medical tests.
Living with an invisible chronic condition is not at all easy. It’s often referred to as a full-time job, and it’s 100 percent true. It takes up all of your time and changes your life both physically and mentally.
I have had to confront a lot of emotions and hardships during my time living with ankylosing spondylitis.
Isolation and self-doubt have been a constant presence.
But making sure I advocate for myself whenever possible has made me feel more confident about my own body, symptoms, and experiences.
It’s also meant that I have created stronger relationships with my doctors and has resulted in new treatment plans that otherwise wouldn’t have been made an option for me.
If, like me, you live with an invisible chronic condition, give yourself a pat on the back. It’s not easy, but please remember that you are not alone, your experiences are valid, you know your body, and you are doing your best.
Fact checked on April 18, 2022
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