Things aren’t always as they seem for those of us that suffer from an invisible illness such as DID, PTSD, or Anxiety.  We may or may not look like something is bothering us, but you never know when a calm exterior is doing all it can to hold back a multitude of emotions and feelings.

This guest blogger post comes courtesy of Erika.  Her story moved me as she shares the struggles of her daily life, and how she lives with her invisible illness.  I can personally relate to so much of what Erika talks about, as she is seeking understanding and compassion, friendship and acceptance.

I’m honored to share your story Erika! You are amazing and awesome in every way and I’m proud to be standing with you and raising awareness.

erika-r-main-photoIt’s coming to the end of Invisible Illness Awareness week, if you were unaware. This is a week, perhaps, like any other for you, but for me it means something. It stands out as a time I should be able to discuss & bring more awareness to myself and what it is you do not see. What you cannot see.

For us and the many that are like us we feel many various things throughout the day. Now that I am aware I actually have the ability to experience human emotions, things have been, well, let’s say trickier than our norm. This has been bringing up all sorts of chaos in my day to day life, but that hasn’t stopped us from really trying to figure out what this week is about.

Living with PTSD, Anxiety, OCD, Diabetes, CSS (a weird sensation disorder) chronic pain due to severe nerve damage and a car accident, Fibro, a few others I’m certain we’re forgetting or just not listing; and we can’t forget about…DID. Now, I know that you may be curious as to why a couple of those made the list, since we’re talking about Invisible Illnesses. Allow me to explain…

You see with DID (Dissociative Identity Disorder) I may be in full blown panic mode ready to peel the skin from my bones and yet, you would have no idea. None. Nada. We may even be sitting and having a pleasant conversation over lunch, but in my mind I’m barely breathing because one of the waiters dropped ANOTHER tray of dishes in the kitchen.

He didn’t mean too, it wasn’t his intent to terrify the bejesus outa us, but he did none the less and here you are gabbing about the kids, weather, and work. In the mean time I sit across from you desperately trying to listen and hear you as my parts come in to help me settle down. This could be Anger, shouting because she’s pissed the dishes were clattered about, AGAIN; it could mean B is stuttering, ambling through mundane responses to your very one-sided conversation. She’s really trying not to let that happen.

This could be any number of things, but now that I’m aware I have DID I very much don’t want toliving with an invisible illness ‘forget’ we had this lunch and this conversation because you are my friend and important to me, yet I cannot seem to get my mind to slow down even though I may appear perfectly fine.

Dissociation is a bitch sometimes. It really is. DID seems to complicate matters. We are chitchatting away and everything appears perfectly fine to you, but for me it is not. Not at all in most cases, especially if we are out somewhere.

I suppose one of my main points here is that I need a bit of understanding and if you’re one of the few people I/we would be having lunch with odds are you are very aware I live with DID.

To you I’m still the same person, maybe, but with a few quirks because you aren’t really sure what to make of it. For that, I am appreciative, but for me every day and nearly every moment some days can be a major struggle.

If I ventured out of my house it’s likely because I can now feel the guilt of avoiding my friends, but that means I need a bit of understanding from you. No, none of this is your fault, nor is it ours; things have changed for me because I am now aware I live with DID in addition to the other things that complicate my day to day living.

If a friend or family member entrusts this very frightening secret with you be there for them. Support them and above all talk to and listen to them. Hear what they have to say. I have anxiety but many of my parts do as well which then amplifies my own and I spiral. Believe me I want nothing more than to sit and have a meal with you, but if you have to repeat yourself multiple times try and not become too irritated with us or me. I’m not doing it on purpose, not in the least.

living with invisible illnessVery few people in my (our) life know I live with DID and PTSD, among other things. I’m an immensely private person in most instances but we’re working hard in therapy to try and accept that people care about us and that I don’t need to do everything alone. Over the last several months I have been really trying to figure out how to explain, for lack of a better word, myself and my parts…Even those who were once very important in my life don’t know I live this way; truth be told, It was an ongoing joke in high school that I had “multiple personalities.” Though now, I don’t’ find that as funny, but these people who helped us through a very difficult time don’t know and that saddens me.

I suppose summarizing my scattered ramblings I mean this… Living with any invisible illness can be exhausting and beyond a struggle, but if you really can find people in your life whom you deem important AND who believe the same about you. Let them in. Even if only a little.

Be there for each other and be supportive of each other’s struggles, whatever they may be. We’ve spent my life hiding in many instances and that my dears is no way to live.

If you’re ill, you’re ill, if you’re well then yay you, but regardless of which side of that fence you fall you can still reach one another from the opposite side.

– Erika



Images provided by Erika with her permission, and feature image from Pixabay.