As you know, the holidays are a particularly difficult time for the chronically challenged, whether you’re suffering from PTSD or Fibromyalgia. So in order to help you help them, I’ve written your holiday letter for you! Feel free to add, subtract, and modify as you will:
I know you don’t know what to say about my illness, and that you’re struggling to find the right words to show that you care for me. Therefore, in the interest of preserving our friendship/marriage/family-work bond (circle appropriate), here are some words to avoid:
- “You must have brought this on yourself.” Truth is, I don’t know how I got here, but I do know that I didn’t will it. Whether it was the family I couldn’t get away from at five, the polluted environment we all live in, or biology, there is a much more likely explanation for this illness than my twisted will.
- “Just think happy thoughts” or its rough equivalent, “be grateful ALWAYS.” While I’m not opposed to happiness, I’m hoping you have the tolerance, the strength and compassion to be able to sit by my side when I’m feeling despair, or anger, or sadness…it helps me get through it. You don’t have to take it on (who’d want to?!), so understand that your compassion is enough, like a ledge I can cling to until I find my footing.
- “Happiness is a choice.” This is a kissin’ cousin to #2. I would love to be able to make that choice, however, my funky autonomic nervous system and lack of Serotonin and Dopamine won’t let me…it’s like chopping off someone’s legs then telling them to run. Turns out depression and anxiety, regardless of what initially caused them, are physical illnesses with a particular relationship with memory and belief. I know you don’t mean to, but this feels shaming, and that only makes this journey more difficult.
- “This is God’s will.” This makes me feel sorry for the Almighty, if S/He exists (or They, I’m cool with that). The way I see it, there are billions of people in the world to fuss over, and I guess it boggles my imagination that God, like Santa, has the time and energy to dump (and without any reason I can figure out) on lil’ ol’ me. This doesn’t mean that I’m not trying to figure out how to make lemonade out of this lemon, maybe grow a little wiser despite the pain and exhaustion. Maybe even start or grow a relationship with spirituality, which might give me comfort and some direction in all this…but you’re telling me that God put me here really puts a damper on that relationship.
- “Things happen for a reason!” OK, so a little more optimistic than #4’s punitive deity, but it still suggests that I needed to get whacked with a 2X4 in order to learn an important life lesson. Again, I’m hoping to make lemonade out of this lemon, but I don’t think that I have to have pain to learn compassion, or a constricted life in order to trust others. Sometimes, given it’s a messy world, shit just happens…
- “You look so healthy.” I know you meant well with this one, maybe you’re even hoping that I’ll respond with, “Yup, so much better now!” and really, I wish. Please keep in mind though that so many illnesses are hidden, and I’m getting the message that ironically you are NOT seeing into me, just skipping on the surface. Maybe that you don’t quite believe that I’m really struggling here.
- This next one is not a specific statement. Instead, it’s any attempt to fix my struggle, or pity me. Either way, it feels like you’re putting yourself a little bit above me and I think you can see that that might not feel good. It also lets me know that you’re uncomfortable with my illness or judge it in some way. Also not good. I’m uncomfortable and feeling powerless enough. And worst of all, I feel alone. I need you. I may not show it, or even know it myself, but I do.
Here’s the deal. Just be with me, SEE me, remind me I’m more than this disease by having a human/e discussion with me. Heck, just sit by me and eat popcorn, laughing at something with me. Your presence, your authentic spirit, fuels me of its own accord. Secretly, I may wish you could fix me, and I know you can’t. You don’t have to feel sad with me, but I need to know you’re in the room with the chair pulled close and a metaphorical/literal (circle one) hand on my arm.
If you’ve already said these things, you might be a little defensive right now, maybe even angry. I hope, before we talk, that you’ll find a way to check that anger; if I were well enough, I’d probably have the wherewithal to remind myself that it’s your anger, and I don’t need to take it on… but I’m not so sure I can right now. I could just tune you out, and eventually shut myself away from you, but I care about you, and about our relationship too much. So I figure I’d be losing you for sure that way, and with this, at least there’s the hope that we can stay in the room together, and talk. This is a really hard time for me. What I need from you is sympathy/support/just to listen to me and say I love you/all of the above (circle appropriate). It’s scary for me to go through this and I imagine it’s scary for you. Please be honest with me. If there are times you can’t bear to hear my story, just let me know.
On the bright side, this really is a journey I’m on. I don’t know where it’s going, or how long (if ever) I’ll get to the other side, and I wouldn’t wish it on anyone…but I am trying to learn things, like how to lean on others, how to notice also that which is beautiful and comforting, how to be in the moment, how to heal from whatever brought this about in the first place. This letter is meant to help you join me in this journey, in whatever way you see fit, with greater confidence…and maybe, a journey of your own.
I’m here when you’re ready.
(your name here)
[FEEL FREE TO MAKE ANY ADJUSTMENTS YOU NEED TO PERSONALIZE THIS TO REFLECT YOUR BELIEFS. Do not feel you must share information with others, especially if you have good enough reason to believe they won’t respond well…your energy is precious, and needs to be freed up to heal in the way you see fit.]