The Physical and Emotional Aspects of Chronic Illness You Can't See in This Photo

I post a lot on social media about my chronic illness journey, but I rarely post any pictures of what exactly that looks like. I don’t normally post any pictures of what I look like in the moment when I feel like hell. So that’s what I’m doing right now.

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

The Physical

There are a vast many truths you don’t see in this picture. You don’t see how badly my eyes sting and burn as I force them to stay open so I can type this article. You don’t see the pain, burning and swelling in my hands and feet. The exhaustion and chronic fatigue isn’t obvious in the photo, certainly not compared to how it actually feels. You can’t tell that my legs hurt, whether I’m sitting reclined on the couch or standing up getting something from the fridge. You’d never know that I haven’t seen straight in eight and a half years because of chronic dizziness and vertigo. In this picture you can’t see the acne that I’ve had going on three weeks as a result of an allergic reaction I had to a mud mask I used on my face. One that I suddenly became allergic to after using it for years with absolutely no problems. You can’t see the medications I take every day, the pills, the ampoules of liquid medication I drink diluted in water… not to mention the extra meds I take when my illnesses flare up. The redness of my skin from walking to or from my car into my doctor’s office in the heat isn’t visible in this photo. You can’t see how bad my hips hurt if I nap laying on my side instead of on my back. You can’t see how much I miss being able to relax outside in the summer without a POTS or mast cell reaction.It’s not obvious how my pain scale is different from that of most people.

The Emotional

My face in the photo may look sad, but it doesn’t come close to showing how lonely I feel on a regular basis. You can’t see how isolated I feel.  You can’t tell how much I try not to complain about the pain and discomfort I feel every day. However, you also can’t see how difficult it is to not grieve the life I once had. You can’t see how mentally painful the knowledge is that my conditions are well known to get progressively worse over time. You can’t see the way I feel like a burden to my friends and my family.It’s not clear from the picture just how much I try to be as positive as I can be every day. Some days I succeed at being positive and some days I don’t succeed. But the effort is normally there in larger capacities than others can see either way.

The Point

This is my reality, the reality you don’t normally see in my photos. This is (some of) the raw truth that I don’t always post about so explicitly on Facebook, Instagram or Twitter. It’s not a pretty truth. In fact, it’s quite ugly. However, it is real. It’s real for me every day and because of the nature of my illnesses… there is no curing any of it. I do my best to cope and to improve my symptoms any way I safely and reliably can, but every day is a journey. It’s the journey of my life and I’m doing my best to ride the journey well.