You'd be surprised how often people tell me what to do to 'fix myself'. Or when you hear something like, "Endometriosis? My aunt had that and she was fine." or "You have low iron? Just eat a lot of meat and greens and you'll be better." It moments like those when part of me wants to laugh in their face and another part of me wants to punch them so hard in the head that they'll see stars.
Dealing with the ignorance of others is one of the biggest challenges in the life of someone with chronic illness. The thing I treasure most in people nowadays is when someone can take my words as truth. I don't care if you can't understand what I'm going through. I would never expect you to be able to fully understand it unless you went through it yourself. The most important thing to me is that my friends and my family believe what I say. You are the only person in the entire world who knows how it feels to be you, to live in your body. What if you were in a lot of pain, say in your stomach. Say it was unexplained and ongoing. You go to the hospital and they order bloodwork and an ultrasound. Both come back perfectly fine. "Everything looks normal!", the doctor says and sends you on your way. Afer this, everyone begins to treat you like you're making a bigger deal than it really should be. People start treating you like you made it all up or telling you things like 'it's all in your head', but you really are in pain. How do you think that would make you feel?
Pain a sign that something is wrong. Even if nothing physically looks wrong. When someone looks at me and says, "But you don't look sick." I don't even know how to respond. 'Okay so because I don't look sick, I must not be sick at all.' It's hard to know if that sentence should be taken as a compliment or an accusation. So, I don't look sick, even though I am -- meaning I took the effort to still get ready even though I feel like crap? Or do you mean, I don't look sick at all, therefore, I'm just faking it and it's all in my head and I'm really not even sick because I were really sick, I wouldn't be able to get out of bed and get ready? I've heard both of these things and I've been accused more than once of not actually being 'sick' or 'ill'. Let me help you understand something. Autoimmune diseases and chronic pain or illness won't usually kill you. Endometriosis isn't going to kill me. It will cause me loads of pain. It will cause the need for perscription drugs and lots of sleep. It means that I will need multiple surgeries if I want to feel a bit better. But it won't kill me, it will just make my life harder than it would be if I didn't have endometriosis.
Just because someone is sick and in pain does not mean they want their appearance to reflect that. Some days I feel so bad that I don't bother doing my hair or putting on make up or even showering. But other days, I do shower and spend time on my hair and put on makeup, and wear jewelry and dress nicely. Just because someone is sick does not mean that every day is a day that they are unable to move and stuck in their pajamas. Some days are better than others and we never know when a bad day or a rough patch is coming. You may feel well enough one day, to have a day packed full of events and the next, you may have to call in sick because you over did it and you can barely get out of bed. It's a balancing act that is almost impossible to control. Having someone in your life that trusts you when you tell them how you feel is so important. And that's what I've come to look for in friends. If someone you love has chronic illness or pain and you and trying to figure out how to be there for them, my advice to you is to tell them "I believe what you are saying to me." Ask them if there is anything you can do for them. Most likely, they won't send you off with a list of chores. When a friend asks me what they can do for me, I'm most likely going to say, "I could use some company." or "Come hang out and have a tea with me so we can catch up." More than anything, we want someone who is willing to be our friend even when we can't do all the things that friends usually do together. Knowing that someone is your friend for who you are and because they enjoy talking with you is so much more meaningful than someone who hangs out with you just so you can go to yoga class together or go out and party. I've learned a lot about who are my real friends over the past few years and who are the people that didn't care enough to stay in my life when thing got hard. Go find the people that care about you and that you care just as much about and put effort into those relationships, because they are the ones that matter.