I could spend this whole blog post apologizing for the fact that I haven’t posted anything in almost a year. I could fixate on the fact that my last two posts were basically me apologizing for my absence as my posting was pretty staggered to begin with. I could apologize, and I will, because I am sorry. But I also want to touch on a huge part of being chronically ill; the fact that we can rarely, if ever, make promises.
As (mostly) usual, check out the Song of the Week page for an awesome recommendation from a lovely spoonie friend!
Dear Friend, Acquaintance, Family Member, Random Person Staring at me with my Walker, or any other person who judges me without knowing anything about me and/or my condition/s and therefore should have no opinion on my medical situation,
This letter is for you.
I usually try to steer clear of you, as negativity is not permitted in my bubble of self care, but alas, you continually attempt to pop my beautiful pink bubble.
I used to think it was easy to avoid you and others like you, but as my medical conditions make it more challenging to survive without the need of mobility or accessibility aids in public and my life revolves around the illnesses more than anything else, we seem to be at an impasse.
I have several chronic, autoimmue, life-altering illnesses, whether you believe they’re real or not. And they are, just to be clear, as years of research and medical documentation support their existence (and I’m not on all of these medications for nothing). These conditions, illnesses, horrible-things-that-have-happened-to-me are in no way fake, misleading, or caused by anything I have done. I do not choose to be ill and miss out on work, bearing children, or vacations with my husband. I do not want to use a cane or walker around the house or in public (even if they are pretty cute), because in reality, it’s all a huge inconvenience. I do not want to spend hours on the phone arguing with insurance companies, employee benefits, or disability services. I don’t want to be in agony over the sound of birds chirping, motorcycles starting, or my husband trying to hug me. This is not a fun life. But it is my life.
This is my life, and it is not yours. And just because it does not make sense to you does not make it any less legitimate. These are illnesses I didn’t even know existed until they happened to me. But now that I know they do, I am a champion for these causes and for the people’s lives they’ve affected. I do not write this letter for your benefit or mine, I write it for theirs. I write this for my friends around the globe who encounter naysayers and hurtful doubters who make their already difficult lives that much harder. Nobody chooses to live in pain, but you are actively choosing to be ignorant to it.
I’ve heard you say things like “just push through it,” or “why are you in bed still?” or “if you just keep moving,” or one of my all time favourites “if you just take this one supplement your life will be completely different” which shows me just how little you know about our illnesses. And if you know that little about them, you are in no position to comment on how we survive them. If you think that one lap around the dog park is not enough to wear us out for days, you have no idea what we’re dealing with.
I’m sorry if this is coming off harsher than I had intended, but enough is enough. If you cannot stick by us, support us, encourage us, and just generally try to understand what we’re going through, then we’re going to have to cut ties here.
Speaking for myself, I cannot push through these exchanges anymore. I am begging for compassion, and if you are unable to provide that, there is nothing left to say.
Thank you, our friends and family who have shown us unending support and love. It means more to us than we can say.
Reading these words, written in this way, seems like something high school kids shout in a formed circle around two bloody-nosed kids who are roughing each other up to appear stronger, tougher, and more bad ass than the other. Looking back, those kids probably didn’t know what they were fighting for, or even about for that matter.
But I know what I am fighting every morning when I wake up. I know what I’m fighting against based on my symptoms and the many diagnoses in my overflowing medical binder. I have many reasons to keep going when I look in my husband’s eyes and my nephew’s brilliant smile. I never know what the day will bring or where this journey will take me, but the one thing I do know is that I’m a fighter.
And this life, with this body, and these diagnoses is how I know I’ve been called to fight. Read More
There are so many unpredictable things about chronic illnesses. You never know when you’re going to have a good day, or even a day where getting out of bed seems feasible.
Sometimes the idea of talking on the phone is overwhelming enough to induce a panic attack and other times you just ache to hear the ringtone.
There are days where the isolation is maddening but you are overwhelmingly exhausted and unable to socialize.