Why It's OK That You Don't Know What to Say About My Illness

I was recently diagnosed with Ehlers-Danlos syndrome (EDS)…And by recently, I mean last week.

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

I have spent the past week trying to find the time and energy to explain EDS to everyone I know. I want to explain how it affects me, and what that means for me in the future.

As anyone with a chronic illness diagnosis can attest, you get a lot of different responses. Generally, they follow the same lines. Some are faith driven, others building my confidence, some professing how they know that I will continue to thrive. Often the responses are a combination of them. I appreciate them all greatly, but they sometimes feel like a forced, “I don’t know how to not make her feel bad,” type of response. However, one of the greatest things happened to me today.

Preferably, I would be able to explain something like this in person. But, as a full-time college student with friends and family who are scattered across the country, it is tough to see everyone in-person. So, I sent messages instead.

After I sent my series of messages, I got a response from one of my best friends in high school. It very simply read, “I don’t know what to say. But, if you need anything, I’m here for you.”

These words were so important for me to read. If there’s anything I’ve learned in the past few months, and the past few days, is that chronic illness is something that is hard to talk about – particularly someone hasn’t experienced it themselves. Their words were simple and honest, “I don’t know what to say.”  Sometimes when talking about my illness, I don’t even know what to say. So, I say something that I don’t really mean or I make a joke to deflect.

I am so glad that my friend sent me that text because it has inspired me to be a bit more honest when I talk about my illness. Instead of responding with the pain-filled smile and the automatic, “I’m doing well,” when people ask how I am feeling, I will be a bit more honest and maybe say, “I’m in some pain.”

It also inspired me to write this story, to tell others who may be trying to understand their loved one’s illness, and to tell people who may be struggling to explain their illness that it is always best to be honest about it. It is absolutely fine to admit when you do not know what to say. Illness is a complicated thing to deal with.

Being diagnosed is a huge life event. Sometimes you need time to process, or time to figure out what you’re going to say – and that’s fine. Just give your support as best you can. If I reached out to tell you about my illness, especially if I wasn’t able to do it in person as I would have liked, know that I care about you, and want you to be a part of my journey.

It is much better to admit that you don’t know what to say than to simply not respond and wait for us to bring it up again when we see you the next time. That may not happen.

If you don’t indicate that you are willing to be a part of the journey, you likely won’t be. That doesn’t mean that we are not friends anymore or that we are no longer close. Illness takes a toll on everyone and we, who are sick, know that the best. I have no expectations of how you will behave around me, but I would like to be able to be as honest with you as much as possible, and that means you need to be as honest with me as much as possible.

Thinkstock Image by DAJ