Welcome to Tissue Issues, an advice column from comedian Ash Fisher about connective tissue disorder Ehlers-Danlos syndrome (EDS) and other chronic illness woes. Ash has EDS and is very bossy; having an advice column is a dream come true. Got a question for Ash? Reach out via Twitter or Instagram.
Dear Tissue Issues,
I’m in agony. Constantly. I had a fall a few years ago and ever since then my back hurts every day. I can’t work and can’t even make it to school half the time. I shouldn’t feel like this! I’m 17, it’s not fair.
My parents (mostly my dad) won’t take me to get tests and scans and stuff, so I have no idea what’s wrong except that I’m in pain. My dad says I’m just lazy and overweight. Yeah, I’m a little bit overweight, but that’s because thyroid issues run in my family and I promise I’m not lazy! My dad always says I’m making it up and what if I am? What do I do? — Sick of It
Dear Sick of It,
I’m so sorry you’re going through this. It is unfair! You have every right to be upset and angry and frustrated.
How I wish I could wave my magic wand and make your parents take you seriously. But alas, I am just an internet advice columnist.
However, I do have the benefit of hindsight, as a former teenager myself. To put it bluntly: being a teenager sucks. I’m 34 and you couldn’t pay me to be 17 again.
High school was hell for me. I struggled with depression and chronic pain, and didn’t get along with my parents. But the hardest part was the lack of agency. I felt so utterly powerless in my high school years.
It didn’t matter how smart I was or how hard I worked, I was a minor, which meant my parents had ultimate authority over my life. I resented having so little control over my own life, and I sense that same (absolutely justified) resentment in your letter.
So let’s talk solutions.
You mentioned it’s mostly your dad who’s giving you a hard time. What’s your relationship with your mom like? Perhaps you could sit her down when your dad is out of the house and have a heart to heart with her.
Do you have a support system outside of your folks? Siblings, cousins, friends, friends’ parents, teachers, and/or a therapist? Someone to confide in who you trust? If so, please reach out to that person.
I want you to have a space to vent without worrying it will get back to your parents.
Though I don’t know what exactly is going on in your body, I do know this: Your pain is real.
I empathize with the tendency to question yourself, especially when some days are worse than others.
Even though I have a diagnosis that explains my symptoms, I still have days when I think I’m exaggerating or that it’s all in my head.
I have to remind myself that I’m not complaining or in bed because it’s fun, but because I am actually in pain! I truly believe that’s the case for you, too.
Please hear me and believe me when I say your struggle is genuine and you have nothing to be ashamed of.
Many chronic pain sufferers become laser-focused on getting a diagnosis. They believe an explanation will allow their symptoms to make sense. I certainly thought all my problems would be solved when a geneticist informed me I had EDS.
While knowing the cause of my pain was indeed helpful, it didn’t change the fact that I could barely get out of bed most days. I had to figure out how to get out of bed on my own.
Even if you did get a diagnosis and found amazing doctors, the bulk of your healing would still take place outside a doctor’s office.
Doctors can be helpful — and are often necessary — for effective treatment, but they’re not with you in your day-to-day life.
So let’s proceed as if there’s something that’s “off” in your body, but we don’t know what yet.
In terms of feeling better, I’m going to point you to the series I write about chronic pain. This one includes 5 actions you can take to feel better today. This one has gentle exercises you can do at home for pain relief. These are some low-cost products you can try to ease your pain. And here’s a piece about how I accepted my chronic illness and got on with my life.
I encourage you to read through these and see if anything speaks to you. Then try that thing out! It will be hard at first, but like most things, it will get easier the more you do it.
Do you have a daily routine? Here’s a piece I wrote about creating one! A routine might help ground you, especially since I’m assuming the pandemic means you’re stuck at home a lot.
Can you commit to doing one kind thing for your body every day this week? A 5-minute walk around your neighborhood? A short meditation? Journaling? If it helps, great! Keep it up. If it doesn’t, at least you tried, and you can move on to the next thing.
You could also try writing your parents a letter or email that outlines your concerns.
It can be helpful to get your feelings out without the threat of interruption by your dad.
Focus on “I” statements (i.e. “I’m struggling to get out of bed because my back hurts so much”) instead of accusations that may cause your folks to get defensive (i.e. “You never listen to me”).
Emailing them gives them a chance to process the information before they speak to you about it. Think about what it is you want from your folks. To see a doctor? To validate your feelings/pain?
You could even get all your feelings out by writing a first draft full of anger and accusations and messiness. Just don’t send that one!
Writing a letter you don’t send is a classic therapeutic exercise. You might feel better after you’ve gotten those feelings out, and then you’ll be clearer about what it is you want from them.
I promise you, life does get better when you’re an adult and get to move away from your family.
It doesn’t necessarily get easier, but it’s more bearable because you have more of a say in your day-to-day life.
You won’t need permission to make a doctor’s appointment, you won’t contend with snide remarks from your dad about your weight, and you won’t be monitored or judged 24/7.
You’re 17, so you’re super close to being an adult. If your parents refuse to help you now, you have to take your healing into your own hands.
I hope some of the pieces I linked to provide a little relief. Chronic pain needs to be treated chronically — that is, daily and frequently.
Your parents may be in charge of you, but you are ultimately in charge of your own body. They can’t keep you from doing exercises at home or journaling or meditating or finding online support communities.
Hang in there. I don’t know you outside your letter, but I truly believe in you. I believe in your resilience and your strength.
I also believe that your pain is real, and that there’s hope for you yet.
Your 18th birthday may seem ages away, but it’s less than a year. I can’t wait for you to get out of your parents’ house and be in charge of your own life. It’s not easy, but you can start to feel better with a little work and a lot of perseverance. You can do it, my dear.
Please update me in a couple of months if you’re comfortable. And know that I’m pulling for you. You got this.
Ash Fisher is a writer and comedian living with hypermobile Ehlers-Danlos syndrome. When she’s not having a wobbly-baby-deer-day, she’s hiking with her corgi, Vincent. She lives in Oakland. Learn more about her on her website.