5 Things I Need From You as Someone With Ehlers-Danlos Syndrome

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Having a chronic illness is hard on so many levels, but having a good support system can make the difference between being able to handle the life or having it take you down.

If you know someone with a chronic illness, then you know that sometimes it can be hard to know how to be supportive, especially if your loved one has recently received a diagnosis.

On the flip side, it can also be hard to tell your friends and family what you need from them as a spoonie. It’s difficult to admit that something is wrong. Here are five things I need from you as someone who has a chronic illness:

1. I need to know that I’m not a burden.

One of the hardest parts of having Ehlers-Danlos syndrome is accepting that I need help just to get through most days. Often, I feel like a burden to you and others around me.

2. I need to know that you still love me.

My body is falling apart and sometimes I feel like I’m too “broken” to be loved.

3. I need gentle hugs.

Just because I have pain all over my body and it can hurt to be touched doesn’t mean I don’t still need it. Give me a hug now and then — just be gentle.

4. I need to know that you don’t think I’m lazy.

I feel so guilty and lazy for laying on the couch while someone else cleans my house or takes care of my kids. Please reassure me that I’m not being lazy, and then move on to the next item in this list.

5. I need to know that it’s OK to take care of myself.

The person who’s the hardest on me is me. Please let me know that it’s OK and necessary to take care of myself instead of pushing myself past what I can handle.

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