"Although I wasn't diagnosed with my conditions until this year, I have dealt with chronic pain since my early 20's. I had some strange things here and there, but I could never explain it and just shrugged it off. I had no idea it was related to an illness. Experiencing pain is not normal!"
This story reflects the unique experience of Carly, a young 25 year old woman, who suffers from Hypermobile Ehlers Danlos Syndrome and Postural Tachycardia Syndrome. Whilst reading this article, please note that these given details and information may not be applicable to everyone. Please consult a medical professional before taking any medicine or treatment as this article has not been verified by a medical professional.
LIFE WITH PAIN
"EDS causes a wide variety of symptoms and co-conditions. My joints sublux or dislocate because of the faulty collagen in my body, and while this doesn't always hurt, my muscles hurt as they're always on overdrive to keep my joints in place. I have issues with balance and can be clumsy due to the structural issues associated with weak collagen. I deal with other random symptoms, like poor eyesight and floaters thanks to the weak ligaments in my eyes."
"POTS makes me have tachycardia (abnormally rapid heart rate) upon standing and I occasionally get lightheaded, because my veins are a bit too stretchy to properly get the blood back up to my brain. POTS can come with low blood pressure too, which doesn't help with the tachycardia, not to mention I am heat intolerant. All of these things can make me more fatigued than the average person as my body has to work extra hard to hold itself together and to keep functioning."
"I hate the way pain interrupts day to day life, especially when I'm out with friends or family trying to have a good time. I have to be hypervigilant about the way I move in the world so I don't injure myself, and I have to stay on top of taking medication, which gets really old. Sometimes I just want a break. More than the chronic pain, the fatigue gets to me. I hate the way that I'm not always able to do the things I want to do, and I don't have enough energy to do the things an average person would do in a day. For example, taking a shower uses up more energy than it would for a nondisabled person, so I have to plan my day around that. I have to pace myself and take breaks around tasks, so it's harder to function like a nondisabled person and I sometimes feel envious of my healthy peers."
CARLY'S SOCIAL MEDIA JOURNEY
"I started my Instagram page (@chroniccarly) because I wanted to connect with other people dealing with chronic illness while also educating healthy, nondisabled people about ableism and what it's like to be sick. I felt so isolated and anxious when I was first diagnosed, but once I created my page and saw other chronically ill people still living their lives, I felt like maybe I could too. I've made new friends and I feel more motivated to keep going."
DEALING WITH STIGMA SURROUNDING YOUTH WITH CHRONIC PAIN
"The moment I first knew that something was actually wrong with me, I talked to my friends and family about it to get advice. At first, they told me that I was just stressed, that I was probably causing my symptoms because I'm an anxious person, and that I should just focus on other things. I was told that 'everyone experiences pain.' I tried to go on with my life, but deep down I knew things weren't right because I felt awful."
"I went to my doctor, who also was skeptical at first. He ran some tests, but it was only once I convinced my mom that I was not okay and brought her to one of my appointments that my doctor started taking me very seriously. The tests continued to come back normal, so I ended up having to research everything myself and bring my suspected diagnoses to my doctor. It's really unfair that young people are less likely to be believed, especially women and more so women of color. It delays diagnoses and treatments and causes unnecessary suffering."
TO YOUNG PEOPLE SUFFERING FROM CHRONIC PAIN CARLY WANTS TO SAY...
"Pain is not normal. Feeling continuously exhausted and unwell is not normal. If you know something is wrong, I really encourage you to find answers, even when people don't believe you and say it's all in your head. Comments like those can end up making you gaslight yourself and question whether anything is wrong, but you know your body best. If something feels off, it probably is. Your pain is valid and you deserve to know what's going on. But with the way the medical system works, you really have to be your own advocate. I probably wouldn't have found out what was wrong with me if I didn't research things myself or continue going back to the doctor even with normal test results. Doctors don't know everything, so I do try to show some grace. However, if your doctor continues to disregard you, find a new doctor!"
"The biggest thing that has helped me is realizing the root cause of all the stigma is ableism. I felt so crazy experiencing weird symptoms in a world where many young people are healthy, and I was really hard on myself when I wasn't able to do the same things that they were. I felt like my condition was my fault. But once I realized ableism was the root cause of people judging me, me judging myself, me feeling guilty for not doing as much as a nondisabled person, it has been easier to make peace with my reality and to call out that sort of stigma, because it's wrong. Ableism is wrong and it felt so validating to realize that society is wrong for perceiving me as lesser than everyone else."
"My #1 tip is pacing. This society praises people for overworking and exhausting themselves. This is not okay and it's ableist! Don't push yourself that hard. When you start to experience pain, when you start to get tired, take a break if possible. The point is to avoid pain and symptoms, not to treat them once they arise if they could have been prevented in the first place."
"Treatment also also depends on why you are in pain. With my condition, I have to do physical therapy everyday to help my joints and strengthen my muscles. I also use various items like heating pads, ice packs, or a brace. Additionally, if you're in school or if you work, check out the accommodations you can get. While I don't need any right now, I've heard that they can be so helpful! Don't be ashamed of needing them, either."
"The best thing I've done so far is create my Instagram page (@chroniccarly). It's so helpful and validating to find people who have similar experiences as you and to know you aren't alone. Aside from that, digging into my hobbies and being more present with my friends and family helps me to get more out of life, despite the pain and symptoms."
"I wish more people realized that finding worth in productivity and "the grind" is not what makes them worthy. You are worthy because you are a human being, not because of how much you can get done in a day. It's more important to have meaningful experiences and to take care of yourself than it is to push through the pain for work."
“ I want people who have chronic pain or chronic illness to know that it is not your fault. While it isn't fair, it doesn't mean that you can't make the most out of what you have. You can have a great life and find moments of joy, despite everything you're dealing with." - Carly 2021