5 Things I Want You to Know About Ehlers-Danlos Syndrome

I had a counseling appointment this week, and I was able to bring my service dog in training with me for practice. I was having a rough day, so I was extra tired and sore. Whenever I bring her in, the staff wants to see her and pet her, which is great for socialization. However, many are behind tall desks, so I have to lift her up to see them. She is gaining weight quickly, and it is becoming harder and harder to get her up. I love to let everyone shower her with pets and kisses, though, so I push through the pain and fatigue of holding her.

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

My counselor noticed me holding her up and showing her off to everyone and later asked me if I was feeling OK. I explained that it was actually really painful to hold her and that I would feel the consequences later. She said that I was a great faker.

It was surprising to hear someone say I was faking being well; I usually get comments about me faking being sick.

During my appointment, I realized that if I don’t tell people how I am feeling, they truly won’t know. Instead of offering to help me, they ask me to do more because they can’t tell that I am hurting.

So for my friends and family, and anyone else I may come in contact with, here are five things I want you to know about my Ehlers-Danlos syndrome (EDS).

1. You only see me on my good days.

On my good days, I am able to leave the house, carry on a decent conversation, and have fun. I look the way I always have, and I act the way I always have. On my bad days, I stay in the house, and sometimes I don’t leave my bed. I spend the day trying to distract myself from the soreness and sleeping the exhaustion away. Just because I have good days and look normal doesn’t mean that the bad days don’t exist.

2. I need help.

Many days, I could use help, even with small tasks. I don’t like to ask or accept help because it makes me feel lazy. I won’t let you know if I need anything, so asking me specific questions is best. If you are out shopping for yourself, ask if you can pick something up for me. If you want to see me, offer to come over to my place instead or push me in my chair if you want to go out.

3. If I am suddenly quiet, you didn’t upset me. I’m just tired.

Sometimes, my fatigue comes on suddenly, and I don’t notice it building. Once it hits, I slow down. I may forget words, get stuck on certain words, or just stop talking all together. I am not giving you the silent treatment. I am probably just tired, and I should go home, sit down, or lay down depending on the situation. I won’t be offended if you ask me what’s going on.

4. I don’t sit still.

I am uncomfortable most of the time, whether it is temperature fluctuations, sounds, lights, fatigue, or pain. I fidget to cope with my heart rate changes, and I move positions frequently to combat the joint pain. I am not trying to annoy you, and I would really like to sit still and relax.

5. I like questions.

If you think something I am doing is strange, please ask me about it. If you notice me trailing off into silence in the middle of a sentence, remind me what I was saying and ask me to finish. It means a lot to me to for you to be interested enough to ask me questions.

I know that if you have read this far you either understand what I’m going through, have EDS yourself, or are just really curious. Thank you for taking the time to read and understand a little more what my life is like. I truly appreciate you!