“Well, of course we’re diagnosing you with it” were the exact words that fell out of my geneticist’s mouth that summer day. I nodded once, heartbroken but accepting. I turned to my mom then as I felt her put a hand on my shoulder with a sad smile plastered across her face. I think I managed to give her one back.
I can’t say I was surprised by my diagnosis of Ehlers-Danlos Syndrome (EDS). My mom had (finally) been diagnosed a few years prior, after years and years of misdiagnosis and mistreatment. And I had been showing signs of it since the day I was born, coming into the world with hip dysplasia.
I had gone into the appointment knowing what the outcome was going to be. And for the first few hours after it was confirmed that I did, in fact, have EDS, I was okay. I was okay with the diagnosis and I was okay with what it meant for me and my future. It was simply just a confirmation of the things I already knew.
So, later that night, why did it suddenly feel like I had just been given the death penalty?
Coming to terms with what this diagnosis could mean for me and my future was hard. It’s taken me years to fully accept it although I will admit that I still struggle with being okay with it all to this day. The days where I wish my body could just be normal. The days where I’m sitting in class thinking, “Oh, cool, my ribs are dislocating” or the days where I wake up thinking, “Oh, rad, both my knees have dislocated at some point in the night”, I long for a healthy body. A body that I don’t have to constantly brace and worry about.
But I’m okay, for the most part, with the diagnosis. And I like to think I’ve learned a few things throughout my continuing hardships. I refuse to ever play victim, to let this disease consume and control me.
I can’t sit here and say I’m an expert on this stuff but I hope that this list can help put some things in perspective for you, whether you have a chronic illness yourself or know someone who does. Especially for those younger EDSers and those who have newly been diagnosed, I hope my advice can help you on your journey to acceptance.
Here are eleven lessons I have learned so far.
That dislocated knee? Don’t worry. It will slide back in place soon enough. Those muscle aches? Don’t worry. Take some Aleve, take a hot shower, and you’ll feel better. That weariness you feel in every part of your body? Don’t worry. You’re allowed to stay in bed. Sleep some more. You’ll be okay. Those plans you have to cancel because you can’t get out of bed? Don’t worry. Your friends are accepting and will be more than happy to reschedule.
2. Advocate For Yourself
Your doctor is knowledgeable, of course. But no one knows your body better than you do. If something isn’t being taken care of adequately, speak up. If you need an adjustment in medication, ask for it. Don’t accept everything your doctor says. Make sure you speak up for what you know is best for you. And as long as you have the right doctor, they will listen.
3. You Will Have Flare-Ups
Just because you have a week of dislocated knees and muscle spasms doesn’t mean that this is your new normal. Some days will be worse than others but this won’t be forever. Take it day by day, minute by minute if you have to. It’s what I do on my worst days. Wait it out and do what you need to do to take care of yourself in the moment. Don’t worry about tomorrow; worry about your right now.
4. Limitations Do Not Make You Weak
You have limitations and you know it. They’re nothing to be ashamed of. It’s okay to admit when you can’t physically do something. If you’re out with friends and you are in pain, it’s okay to say you need to sit down for a bit. If you can’t do something because you know it will cause injury, even if it’s something you think you should be able to do with no problem, that’s okay too. If you can’t then you can’t. You’re not weak. You’re just limited. And sometimes your limitations will cause you to ask for help and that’s okay. Your family is there for you. Your friends are there for you. People are willing to help and they won’t look down on you for needing them.
5. Do NOT Use WebMD
You don’t have cancer. You aren’t dying. No matter what this terrifying website says, you are fine. You know the core reason of why things are occurring. So, next time you have a new symptom that is freaking you out, Google your symptom along with the name of your disorder. That way, your results will be narrowed down enough that you won’t be fearful of your prognosis. Or reach out to your fellow people with your same disorder. Odds are, someone else has experienced the exact same thing you have.
6. Every Symptom Is Important
No matter how small, no matter how trivial it may seem, everything is worth taking note of. Certain smaller symptoms have the potential to add up to a larger issue. And this issue can lead to a different and ultimately better treatment plan.
7. Keep A Journal/Take Pictures
Those small symptoms you may not understand the importance of should always be written down. It’s so easy to lose track of everything and it’s easy to forget the small things, especially when you’re trying to explain to a doctor what happened well over a month ago. So a journal or a picture log (when appropriate) can help you in huge ways. Having trouble convincing your doctor that something happened? Pull out your log and prove it. Not clear on how certain experiences/symptoms could be related? Pull out your log and see if you can connect the dots. Having a physical thing to refer to and check will help both you and your doctor.
8. Appreciate The Good Days
Some days, you won’t be able to get out of bed. Some days, every muscle in your body will ache. But some days, you will feel great. Some days, you’ll be able to remain up and about all day and not feel like your body is falling apart. Some days, you won’t even notice there is something different about you. So appreciate these days. Never take them for granted. A “normal” day is the best you could ask for.
9. Brace Up
It doesn’t look stupid. People may look at you but they aren’t judging you. If they ask why you have a specific brace on, tell them in the simplest way. If you need to wear two knee braces along with a wrist brace then do it. Don’t allow your fear of judgement to take precedence over your need to maintain your health and keep your body in line.
10. Your Disorder Does Not Define You
This is one I still have trouble accepting but I’m slowly getting better at it. The term the doctor assigned to you does not overpower your good qualities. A diagnosis does not become a personality trait. It does not take over the core of who you are. You are a good person who may not have been dealt the best hand in life but you are still important.
11. You Are Not Alone
You have family and friends that love you and can sympathize with what you’re going through. There is a whole community online that continues to grow by the day that is filled with people just like you. There are conferences to attend that are for people with the same affliction. No matter how debilitating it may be, there is always someone who is going to be willing to pick you back up. There are people out there who will listen, who will give you advice, who won’t judge you for what you tell them. And that is the best gift anyone could ever ask for. In a life that’s filled with unpredictability, the support of these people is something that will always remain.
This article was originally posted on The Odysessy Online and has been reproduced with permission from the author.