When Formal Education with Ehlers-Danlos Syndrome Isn’t Possible: 3 Tips

As discussed in the previous articles in this series, attending school with Ehlers-Danlos Syndrome (EDS) can be extremely difficult but possible with creative adaptations. Sometimes, however, accommodations aren’t enough, and formal education is impossible. 

The United States has compulsory school attendance laws, which vary significantly by state, but all take the truancy of school-aged children under their state’s definitions very seriously. Fortunately, states realize exceptions are needed, and more options for parents and children become available. You can check with your state’s board of education to find and file exemptions due to physical disability. The U.S. Department of Education website is also a great resource on all aspects of alternative education options and regulations regarding schooling.

Not attending school brings a new set of issues to the table. A loss of socialization, education, a sense of grief, and many other complex emotions. What to do about those issues? 

First, take a deep breath, then start thinking outside the box.

1) Getting Social

The social aspect of formal education is crucial for many children, especially tweens and teens. While that social experience can’t be replaced entirely, it’s essential to realize that we live in a technological age where socialization with a wide array of people from all over the world is possible. Be sure to keep in touch with your friends from school when you’re feeling up to it via video chat, online games, social media, and phone calls. Expect some of these relationships may suffer from not being physically present, it will be hard, and it will hurt. Also, expect, though, for some of these relationships to become much deeper – this is a silver lining to treasure!

• Expand your social circle! Look into online groups for those with similar interests or going through similar experiences. Many of these groups have both in-person and virtual meet-up options. If you can’t find one, start one of your own.

• Attend online events! Livestream concerts, lectures, tours, and more are just a few clicks away and are a great way to meet new people!

• Get your game on! No matter what type of gaming you’re into, there is an online community full of people who would love to play it with you! 

2) Getting Smart

Intelligence has absolutely nothing to do with formal education. Read that again, as many times as needed. This can be something that is very hard to fully accept for many. Societal standards in the United States reinforce equating with education and intelligence, but if you take a close look, you will see that is just not the case. Learning, however, is something that is vital and necessary to continue throughout your life. Learning takes many forms; we learn from life experiences – such as illness, from relationships, and from taking a closer look at the things and people right in front of us, in addition to more traditional methods. 

Now is the time to follow your passions down into a rabbit hole, as well as focus on learning the more basic subjects via means that may suit your learning methods better than a standard school setting.

Think outside the box about careers you could create that would accommodate your health condition and would not require a degree. What knowledge and skills do you need to turn your passion into a unique career? Try to focus on those in addition to the basics. Here are some great methods and resources for doing that!

• Books: No matter the form, audio, e-book, or the physical type, these are widely available FOR FREE! Your local library is a great resource for books and beyond, and MANY have services available to deliver and pick up books for return for those that are homebound. 
• Tutors: If finances allow, in-person or virtual tutors are a great option. Sometimes barter or trade can be worked out as payment, or costs could be split between those in a group setting.
• YouTube: Who hasn’t looked up how to do something on this site? It’s an amazing place to learn absolutely anything from experts. There is even a special section devoted specifically to learning more traditional subjects!
• Streaming services: All the major streaming services offer great educational programming and documentaries. Many are available with a smart TV or streaming device.
• Experts: People love to share their knowledge and passions! Ask your friends and relatives if they’d be willing to teach certain skills or tell you all about their favorite subject!

3) Getting Through It 

Losing the ability to attend school can feel almost like the loss of oneself. You may feel like you are giving up on your dreams and don’t have a “normal” life. Allow yourself to experience these feelings and the grieving process. Know that normal doesn’t exist and that being interesting is far more fun and impressive to others than your degree. 

• Reach out to friends, family, doctors, therapists, and even strangers on the internet who are in similar situations and talk about these feelings.
• Keep a journal to process and cope with feelings and to keep up with your writing skills!
• Look for guidance from those who don’t have a formal education but have mastered a skill or become an expert on a subject. Keep reminding yourself how many of these people there are!
• Help others, and share your knowledge, skills, abilities, compassion, and creations with the world!

Crystal Sullivan

July 2023