By Jorie –
Lately I’ve been reflecting on the dichotomy of friends and chronic migraines or chronic illness. They don’t often go happily or easily hand in hand. We’ve talked about friends, relationships, and social life many times here on the blog before, and that’s because it is such a major topic for us. We have trouble in those departments more often than not.
I received a text from one of my closest friends from middle school recently that made me smile BIG. (You know who you are). She said,
“I just want you to know I see all your Facebook and blog posts and I’m thinking of you. I hope you have some good days coming up.”
That one little text message made me feel a thousand times better. Even through the pain and suffering, those few words brightened my day, especially being at the crossroads of diagnosis and feeling as though I have no answers or relief. Just that small gesture alone made me feel a thousand times better. Even though we as good friends don’t talk daily or even see each other monthly, this let me know that she still “sees” me. She’s still there. She cares. And that’s truly priceless.
The truth is, I don’t get texts like that very often. So when I do, they’re really special. I definitely don’t take any of my friends for granted, the Spoonie friends nor the normal, healthy ones. I’m extremely grateful for each of them and their support in their own unique ways.
Unfortunately though, as I’m sure many of us with any chronic illness can relate, I tend to self-isolate from my friends when things aren’t going so great with my health. So the last few months I’ve sort of gone MIA. My mom likes to call this “mushrooming,” also known as keeping someone in the dark. It’s a natural coping mechanism. I feel like a burden, like I’d just bring them down, so I figure that my presence is better off as far away as it can get.
During this time I bond more with my Spoonie friends because they “get it.” They go through the same hardships I do daily. We exchange our struggles and give each other the support of just knowing we’re not alone. But it doesn’t mean my other friends are any less or don’t care or can’t sympathize.
I discussed this with another close friend recently as well (you also know who you are). I told her how burdensome I felt, and apologized to her for keeping silent for a couple months. I explained the difficult road I’ve been traveling with confusing diagnoses. She came back with this:
“I’m so sorry that you have been going through this and have felt like you’ve had to do it alone but I love you dearly. You’re never a burden.”
These words felt like another sigh of relief to me. Oftentimes for those of us living with chronic illness, we really need that reminder that we aren’t the burden that we so worry about. Hearing these things come from lifelong friends, friends who don’t have chronic health conditions, is refreshing. Even though at times they don’t totally “get it,” they still try their best, and that’s all I can ask of them. They never make me feel like I’m less than just because I’m fighting this perpetual health battle.
But yet, I still distance myself more often than not. We connect for a while, and then I let go and drift away for a while again. I find it extremely difficult to keep up the mask of being “okay” and like I said above, I don’t want all our conversations to be about my poor health. I don’t want to be known as “the sick friend.” So I opt for “the friend who is never there” instead, to my perpetual regret. I fade into the same invisibility as my illnesses.
It’s hard to hang out with people who aren’t sick. It’s hard being reminded that you have so many restrictions in your life: you have to go slower, you can’t eat or drink certain things, loud noises and bright lights are excruciating, you can’t stay out as long, you can’t feel like a valid member of your own generation — the list goes on. I frequently feel like I can’t be the friend everyone wants me to be, like I just can’t keep up.
But like those two friends from above assured me, I’m still a friend, no matter my health and life circumstances. It’s something I have to accept — I’m sick, but I can still have healthy friends, and most importantly, healthy friendships. It’s not their faults that I drift away from them; it’s mine. So one of my New Year goals is to try harder to keep up with those friends. In the meantime…
Here are my top 5 tips on what we really need from YOU, as our friend, confidant, and overall “person.”
- Please don’t pity us. No matter how bad our situation may seem, we really don’t want you to think “oh, poor thing” when you see or talk to us. Yeah, our prognosis might be bad, but we’d prefer for you to look at it from a more optimistic perspective. Help us out! Pour our glass half full. No apologies — you didn’t do this to us, you can’t cure it, so please… don’t pity us.
- But don’t downplay our pain or illness, either. While we don’t want pity, we definitely DO want you to understand the severity of our health condition and be sincere about our feelings. We DO want sympathy where it’s appropriate. Yes, sometimes it is “poor us” or “why me?” but we carry on anyway. Still, we are chronically ill, that’s the cold, hard truth, and we do want you to remember it.
- It takes courage for us to open up. Being open and honest about the state of our health is scary sometimes. It makes it feel more real. It can take a lot for us to even share small pieces of the big illness puzzle such as test results, gory symptoms, and even just the little accomplishments we make in a day’s time. If we’re sharing these details with you, know that we trust you with this information and that we expect you to take it seriously. On the same note, sometimes we just need to vent about all that stuff, too.
- But sometimes we need to get our minds off our illness for a while. When we hang out with our “healthy, normal” friends, usually our minds are taken elsewhere — away from pill bottles, medical tests, health diaries — whatever it may be. Our lives are reminders of our illnesses 24/7/365. So we are able to “forget” the chronically ill part of ourselves for a while when we’re with you, and for us, that’s super relieving not to have to focus on for a bit. We may have to check some things or have some restrictions but for the most part, we hope that you can be a fun, genuine distraction for us.
- We know you don’t totally “get it” and that’s okay. Not living the chronic illness life is something a lot of us take for granted, but trust coming from those of us who are sick when we say we wouldn’t wish it on our worst enemy. We don’t WANT you to completely “get it.” Don’t sweat it if you just don’t grasp how it is for us medically day in and day out; it’s okay. We understand that you try, and that’s all we ask. It’s the best gift to just be there. Your sympathy, support, and friendship are enough for us. It’s all we truly need.