Letter to Family and Friends

If you’re having trouble explaining your situation to loved ones, you may find the following language helpful. Feel free to use as-is or to make it your own.

Dear Family and Friends,

I’m writing to help you better understand what I’m going through. I have a rare medical condition called Tarlov cyst disease—spinal nerve cysts that can damage nerves and cause significant pain and disability. It is not well understood by the majority of the medical community. Only a handful of neurosurgeons in the world specialize in treating this condition, though treatment outcomes are improving and many patients are finding relief. I’m trying to remain optimistic.

I worry about how the changes in me are affecting you. I care deeply about my family and friends, and I still want to hear about your lives, your families, and your activities. I like talking about things other than my medical condition and pain. I still have the same interests I’ve always had, even though some I can no longer actively pursue. I’m grateful for what I can still do.

What living with this condition looks like:
My comfort level varies greatly and can worsen quickly if I’ve done too much. I never know from day to day—or even hour to hour—how I’m going to feel when I wake up or how painful the day will become. I may need to cancel plans at the last minute. If this happens, please don’t take it personally. I constantly have to re-prioritize based on how I feel.

Please understand the difference between “happy” and “healthy.” If I sound happy, it means I’m happy—that’s all. It doesn’t mean I’m not in pain, not exhausted, or “getting better.” Please don’t say, “You’re sounding good!” or “You look so good,” as if nothing could be wrong. When I’m with you, I try to smile, laugh, and enjoy our time together. I’m coping, and I’m happy to be with people I love, but that doesn’t mean I’m not hurting.

Please understand that being able to sit, stand, walk, or socialize for 15 minutes doesn’t mean I can do it for 30 minutes or an hour. Just because I managed something yesterday doesn’t mean I can do it today. If I say I need to sit or lie down now, I mean right now—it can’t wait. The recovery time from overdoing it is significant. I may pay for extra activity for days or even weeks afterward. It’s possible that one day I can take a walk, go to lunch, shop, or attend church, but the next day I’ll struggle to walk to the next room. Please don’t think, “But you did it before!” or “I know you can do this!” If you want me to do something, ask if I can. I really try to be as active as my pain and symptoms allow, but even a single activity can trigger more symptoms and increased pain.

What I need from you:
The sadness or irritability you might hear in my voice (though I try to hide it) comes from the pain and the adjustments I’ve had to make. I miss my old life and not always being able to do what I want or need to do. If I seem distant, I’m probably experiencing increased symptoms. Chronic pain is exhausting and exasperating. I’m doing my best to cope and live my life as fully as I can.

I still need you in my life. I still need you to call or visit when I can’t go out. It’s very hard for me to ask for help—I don’t want to be a burden. If you live with me or are close to me, sometimes I need help with shopping, cooking, cleaning, or gardening. You are my link to normal life, helping me stay connected to the parts of life I miss so much.

It really does mean a lot to me that you care. Thank you for reading this, and thank you for your support.

With love and gratitude,
Someone living with Tarlov cysts