10 Things to Know About Living With EDS (When You Don’t Have It)

To start off I am going to tell you flat out – I am living with Ehlers-Danlos syndrome. It affects every aspect of my life, from my marriage, to raising my children, to the state of my house, to the state of my mental health. I am living with it day in and day out. But I don’t have it.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

Ehlers-Danlos syndrome (EDS) is an inherited disorder that affects the connective tissue in your body. Connective tissue can be found almost everywhere in your body like your skin, muscles, ligaments, organs, eyes, gums, and more. In a person with EDS, all that connective tissue is made wrong and that can cause big problems.

This is my perspective as a wife and a mother of loved ones affected with EDS. To be clear, I don’t have it. But I definitely live with it, and maybe you do too, so here goes…

10. It is different for everyone.

I live in a five-person household counting myself. Four of the five have EDS and not one of them have it the same. From my middle child who runs, jumps, and pops his hip out bending his knee so his foot is in front of his hip to freak out bystanders; to my oldest who is covered in stretch marks from her knees to her neck; to my youngest who has so many motor delays that he has been in therapy since he was 3; they are all different.

Then there is my husband, whose multiple shoulder, back, and elbow surgeries didn’t quite fix the problem and whose surgeon couldn’t understand how he kept dislocating his shoulder and not noticing it. Every one of them has the same condition with wildly varying symptoms and needs. There is no playbook, there is no rule book, there is no “What to expect when you are expecting…EDS!” Get ready to learn as you go…

9. Doctors may not recognize it.

Your doctor may have heard about it once in medical school. They’ve never seen it, but what they know about it is that the affected person is “double jointed” or that it is a problem of the joints. So, when you try to explain that your kid’s horrible vision, bad teeth, motor delays, weak muscles, and loose joints are all related, you get an “uh-huh” or a “sure.”

And when my son needed an emergency appendectomy in a small-town hospital, I got to watch the anesthesiologist Google EDS on his phone. So, get ready to be an expert and an advocate.

8. The school may not know what to do about it.

Let me start off by giving props to my local public school. They are willing, caring professionals who genuinely want to help my son. But once again, I am the expert in the room. I am the one bringing in pamphlets and explaining why my youngest son’s needs are so different from his siblings if they all have the same thing. The school’s occupational therapist had been working with my son for over a year and never mentioned to me that there are finger splints that people with EDS can wear to stop their fingers from bending the wrong way when they try to hold a pencil. I found that out on my own when I found a hand clinic at the nearest children’s hospital. It was like magic. He went from not being able to write his name, to writing pretty much on grade level in the space of a month with a finger splint. And it wasn’t the school that figured it out, it was me.

Be ready to push the people helping your children. Ask questions, go to every meeting, express your concerns, and know the law. The school is required to do certain things by federal law. A medical condition alone does not guarantee your child extra help, but it does if it affects your child’s education. But you also need to realize that the help your school provides may not be enough.

7. Get ready for the medical bills. 

Let me start by saying that I live in the United States, both my husband and I work full time, and we pay for medical insurance through my husband’s work. Our medical bills are devastating. It’s never ending, and it has been getting worse. Some days I can have a positive attitude about it, but other days I just get angry.

It’s like this – my son has a motor delay that impacts every aspect of his life. He does better with physical and occupational therapy. Those therapies cost us $120 a week. We used to have insurance that covered them, but our current insurance does not. He also needs braces in his shoes to help him walk. Our insurance considers them nonessential and recommends we buy them over the counter. Our doctor strongly believes he needs custom inserts and so we pay $300 every time his feet grow.

Then there are the normal things our insurance does pay for (sorta). My husband has scoliosis, chronic back, shoulder, elbow, hip, and knee pain, and a severe eye problem (pellucid marginal degeneration). He tends to do well for a while and then everything goes bad at once. The other two kids only have small issues, but it all adds up. Basically, everyone in my family but me needs constant medical care, so the bills are never paid off. And there is no help. We have been told by multiple agencies that if my husband quit working, then both he and my youngest would qualify for SSI disability. Can you imagine being told that?! My husband likes working. He goes to work in pain. He goes to work even though he can’t drive for the company anymore. He goes to work almost every day no matter what. And the only way we can get extra help for him or my son is if we take that away from him!? So, no advice for this number. Just get ready for the bills…

6. It is exhausting for them. Accept their physical limitations.

Sometimes this condition is called an invisible illness. You can’t see it. They “look” normal. But they are pretty much in constant pain and that is exhausting. My daughter once told me she thought it hurt everyone to write, so why would she say anything. If your kids tell you it hurts, it does. None of the “no pain, no gain” nonsense. They are going to have this condition for the rest of their lives. Anything you can do to prevent future pain is worth it. At school this might mean a modified PE, a lighter backpack with a set of books at home and a different set in their desk, and none of those “write each definition five times” assignments.

Family trips are planned with shortened days and extra breaks. I know their friends can spend five hours walking around at the zoo, but if after an hour your child says they are tired, they probably are. And things get worse as they get older. My husband has pain in every joint. He has had a lifetime of dislocations and failed surgeries. He is losing his teeth and his vision. Did you know that your digestive system is filled with connective tissue? It is. Take a minute and picture how weakened connective tissue in your bowels could affect you. When he is tired, he sleeps for days – like does not get out of bed for 36 hours at a stretch. And this is his life forever. So, your job here is empathy and acceptance.

5. It is exhausting for you, too. Accept your limitations.

In a perfect world, a husband and a wife can evenly split the household tasks between them, so no one is overwhelmed. And it works that way in my world sometimes. At other times, almost without warning, my husband is injured and can’t get out of bed, or exhausted, or on the toilet for three days straight, or accidentally dislocated his shoulder again and can I stop what I’m doing and please help him get it back in… And then all of a sudden, I am a single parent of four people (three kids and my husband). If the grass needs mowed, the grocery shopping needs done, the laundry needs washed, homework needs checked, the bills need paid, and all the multitude of tasks that families deal with every day, then I am the one doing it.

I know lots of single parents do this all the time and I am no hero, but it can be exhausting. And the biggest favor I can do myself is accepting my limitations. If that grass doesn’t get mowed this week, but everyone gets supper and goes to school on time, it’s a win. If the laundry isn’t folded and put away, but everyone has clean clothes, another win for me. Accept that you are doing the best you can with what you have.

4. It’s not just physical.

Imagine for a second not being able to count on your body. You are in physical pain all the time. Sometimes when you are doing simple everyday activities like playing on the playground, your joints dislocate. All your friends seem to be stronger than you. And you are always tired.

It’s not a surprise that people with EDS are more likely to have mental illness. And it’s important to treat it as carefully and as seriously as everything else. Anxiety, depression, mood disorders, and more are all things to watch for. In my family’s experience, pain makes depression worse and depression then makes the pain worse. It can feel like a never-ending downward spiral. So, don’t be afraid (ashamed, embarrassed, or whatever) to seek help. Your loved one’s mental health is just as important as their physical health.

3. But it is physical. So, don’t freak out.

The first time my husband dislocated his hip in front of me, we were doing yoga and I was trying to show him how to do pigeon pose. He pulled his right knee and lower leg forward across his body on the mat with his left leg straight back. He leaned forward (as the pose requires) and BAM! or maybe OOPS! would be a better description. His hip just slid out of joint. Then there was pain (lots of pain). We figured out how to get it back in and now he doesn’t do pigeon pose anymore. This was a normal day in our lives. We don’t even bat an eyelash. If your joint goes out, you put it back. If you can’t get it back in, Google it. If you still can’t get it back in, then there is an ER in your future. We can’t treat every dislocation like an emergency and we don’t.

2. You are going to make mistakes.

See the above pigeon pose incident! I was convinced that yoga was the solution to my husband’s hip pain. It wasn’t. I used to tell my daughter (before her diagnosis) that if her teacher told her to write her spelling words 20 times, then that was what she was going to do. I let the neurologist run all kinds of expensive and crazy tests on my third child, because the neurologist didn’t believe that his EDS could be so different than everyone else’s in the family.

And way back in when the doctor diagnosed my second child with EDS (long before anyone else in the family) but told me it just meant that he had loose joints and it wasn’t a big deal, I believed him. I didn’t learn anything about EDS, didn’t realize that it was autosomally dominant (which meant if he had it, someone else probably did too), didn’t realize that it wasn’t a “joint problem.” it was a connective tissue problem and the human body is filled with connective tissue.

So anyway, mistakes were made. And you’re probably going to make mistakes too. It’s OK.

1. Don’t let this be your whole life.

By its very nature, this illness is all-encompassing. It seems to affect every part of the body and that makes it touch every aspect of your life. If you’re not careful, your whole life becomes about therapies and doctor visits, accommodations and IEP goals, “catching up” and “falling behind.” But that can’t be your whole life or theirs. So, find the balance between helping them live their best life (which is what I call all that stuff) and just letting them live.