To the Friend or Family Member Who Doesn't Understand My Illness

It has been 13 years since my symptoms began to manifest and five years since the first of my five diagnoses. Some have you have been with me and supportive from the very beginning, some of you waited until I began receiving diagnoses to acknowledge there is something wrong, some of you have only known me a few years, some of you decided to end our friendship for various reasons related to my illness, and while most of you acknowledge I am sick, none of you (apart from those who also have chronic illness) understand what I feel like 24 hours a day, seven days a week, and will continue to feel like every day for the rest of my life.

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

Acknowledging I am sick and understanding my illness are two very different things. I recognize that, on the surface, it appears there is nothing wrong with me and it can be difficult to wrap your head around my invisible illness. What you see is my mask. It’s the mask I wear from the minute I step out my bedroom door in the morning, knowing I must interact with a world that doesn’t understand or want to deal with the reality of my pain, and keep on my face until I’m back in my bedroom for the night.

 

What you don’t see is that at any given time, at least one (but usually several) of my joints are either slipping in and out, or stuck partially out of the sockets. You can’t see that my tendons and ligaments are stretched too far, too thin, and are covered in micro-tears. You don’t know that every night, I never truly fall asleep because I have to be aware of my body and how I’m laying because if I move the wrong way, I will dislocate my shoulders. You don’t know that even when I do manage to fall asleep, I’m awoken in the early hours of every morning by the agonizing pain of the tears in my back muscles that never fully heal. You don’t see that I set my alarm for three hours before I need to start actually getting ready because it takes me that long just to gather the energy to get up and that, once I do, every single step I take afterwards is completely exhausting, regardless of how much sleep I’ve gotten.

You don’t see that when I’m walking into a building, I have to use the handicap button to open the door because it’s too heavy and I physically can’t open it on my own. You can’t see the head-to-toe body pain that feels like I have been simultaneously hit by a truck, set on fire and dipped in acid. If you could see what I was feeling, you would see a body that is hunched over and covered with bruises that are black and blue. Just the feel of the clothes against my body is excruciating – even my face hurts. The bones slip in my feet as I’m walking and the bones slip in my hands when I write. My knuckles are subluxing as I type this.

You can’t see the battle going on in my head as I fight through the brain fog to get my thoughts out. You don’t know that I take enough medications and supplements every day to fill a 2-gallon Ziploc bag or that I have to wash my hands 100 times more than a healthy person because my immune system doesn’t function properly. You don’t know that I spend every hour of every day feeling like I’m going to vomit and having to force myself to eat.

I know this is a not a pretty picture I have painted for you, but this is my life. I hide these things from you because this pain is mine and not yours. I get out of bed every day because I choose to fight and live my life. I put on my mask and smile because I choose to enjoy and appreciate the time we have together. That being said, here are some things you can do to help me:

Don’t make assumptions about what I can and cannot do. I know it’s difficult to understand, but things that may seem trivial and easy for most people can be and are very difficult for me. Instead of making assumptions, if you want my help with something such as unloading the dishwasher, folding the laundry, etc., please ask me if it’s something I feel up to doing, and please don’t be upset with me if I tell you I’m not.

Don’t tell me how to live my life or what will make me feel better. When you make comments about how much time I have spent in bed when I could have been out doing other things, it makes me feel bad about myself. I already hate the fact that I spend a good chunk of my life lying in my bed when I could be out enjoying the beauty of the state we live in or spending time with my family and friends, so having you call attention to everything I’m missing is just rubbing salt in a forever open wound. I know you mean well when you tell me I’ll feel better if I just get out of bed and get some exercise or recommend a treatment you have heard about, but chances are I’ve already heard or tried these recommendations a thousand times before and, at the risk of unintentionally sounding rude, I’d much rather discuss my options with my team of medical specialists.

Be patient with me. If you ask me to do something, it may take me a while to get it done. If we’re out together, I may move a little slow. If we’re having a conversation and I can’t get my words out, please don’t get frustrated. I promise that in that moment, I’m frustrated enough for the both of us. If you send me a message, please don’t be upset or angry if it takes time for me to respond. It doesn’t mean I’m ignoring you, it simply means my mind is exhausted and it’s too difficult for me to form a coherent thought. I promise I will get back to you as soon as I can.

Please don’t be angry with me. There will be times where I am too sick, too tired or in too much pain to get out of bed. It’s difficult for me to plan ahead and there will be times I have to cancel last minute. I have and will continue to miss important events. I may miss a birthday party, a family get-together or a wedding here and there, but it’s not because I don’t love you or don’t want to be there, but rather because I physically can’t.

Listen. I don’t often complain about how I’m feeling, but sometimes I just need to vent. You don’t need to try to come up with something to say to comfort me. The only comfort I need from you is your listening ear and gentle hugs.

Ask me if there is anything you can do to help. More often than not, if you ask me how I’m doing, I’ll grit my teeth, smile, and say, “I’m OK,” or “I’m fine,” but know I am almost always lying. That being said, please still ask me if there is anything you can do to help. I may decline, but it will help me just to know you care and are thinking of my well-being. I also may need some help getting my laundry upstairs…

Know that I always love you. I may not always be able to show it, and I may not tell you enough, but there isn’t a moment that goes by when I don’t love and appreciate every single one of you.

I know this is a lot to take in, but I’ve felt recently that we have had a difficult time communicating and I wanted to share these things with you in the hopes of helping you to gain just a glimmer of understanding of what I’m feeling, so we can have a stronger relationship moving forward. Thank you for taking the time to read!

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Thinkstock photo via Ryan McVay.