Some days I want a direct line to the complaints department for living with lupus. But those are the days I also want a direct line to the complaints depart for people who think they get what I’m going through, but really don’t.
For example, when I have managed to get myself out of bed, showered, hair done and dressed and suddenly find myself needing to rest before I finish my morning routine, it does not equate a healthy person’s tired from staying up too late the night before. It’s not even close. And I do not have the energy to educate these people. (Would it even be worth the expense of my energy to try and educate them given that some people do not want to learn what they don’t know.)
Another example, you insist. No problem. There are times when my joints feel like they are filled with shards of glass. Each time I move, those shards of glass slice and grind further into my body and set my joints on fire with pain. When I don’t move, I still have a slow burning pain. This does not match the pain of someone who does too much being a weekend warrior. You see as a weekend warrior your pain will go ago. Mine will just be tamed a little here and there, waiting to erupt into a full raging fire with the least provocation.
In the past I could almost make a meal out of the number of pills I was prescribed to take on a daily basis. So you will excuse me if I don’t bat an eye when you say you need to take your pill twice a day. Injections? Yep been there, done that and have the holes to prove it. (Still do it to be honest.)
Sure on the outside I may look relatively okay although you will never see me not in long sleeves and pants, I don’t care how warm it is outside. Sure you may envy that rosy glow on my cheeks, but if I were to take off the make-up that’s doing it’s best to keep it under control, you’d not want to brilliant red rash that it really is. So please don’t tell me “it’s just a little color in (my) cheeks”. It’s more than a little color and I’d rather it not be there, but it insists on coming along for the journey. Also please don’t tell me about the time you forgot to reapply your sunscreen and burnt your face. It isn’t the same, I know because I have had a horrible sunburn in the past.
I didn’t ask for lupus nor all the “fun” that comes with this disease. And I’m really not trying to have a game of one-up with you so I’d appreciate it if you didn’t feel a need to play that game with me.
Sometimes I just want you to acknowledge that when I’m tired, I’m tired. When I hurt, I hurt. I don’t need you to seek to compare it with something in your life, I’m not asking for anything other than to have the freedom to make the comment and it be taken for what it is. A comment on my life at a given moment.