How to reach out to a friend with chronic illness
Nothing is worse than suffering from chronic illness - except suffering alone.
There have been times in my life where I have felt so alone that I felt I could not go on. But we are never alone - someone always cares. Sometimes - often times - they just don't know how to tell you they care.They don't know what to say or how to say it.
The first part of this post will discuss this dynamic from my experience with a friend who died from cancer. Then I will move on to talking about how to reach out - both those who are suffering and those who want to be there for someone who is suffering.
It's not a perfect process, and mistakes will be made. But, it's important that we at least try and are honest with one another, nurturing those "real" relationships that make life worthwhile. Not those fake ones that are superficial (although they have their place in life), but those deep ones that create real connection and love. It's not easy for anyone when someone is suffering. But if we all reach out and are there for one another, a lot of healing can happen.
I have suffered from many illnesses in my lifetime. It's not an easy road to travel, but it's the hand I've been dealt. The best relationship I've had is with my now husband. We get each other. We understand each other's pain but we don't try to "fix it" - we just listen. That's the biggest lesson we've had to learn. You can't take on each other's problems, but you can stand by one another as you deal with life.
My best friend died when we were 24 after she battled terminal brain cancer for three years. She taught me so much in those three years, especially those last 8 months, that I will take with me for the rest of my life.
The biggest lesson was how to be there for someone when you can't "fix it". Some people seemed to immature to deal with it and so they left her feeling like they didn't care. She actually said that to me one day - "no one cares, it's not them dying". It broke my heart. "I CARE!" I told her. And I knew other people cared. They just didn't know how to deal with it all, so they tried to pretend everything was fine. But it wasn't. And so the pink elephant sat in the back of the room feeling ignored and unloved.
I tried to follow her lead. Did she want to talk about it? Did she want to pretend she was okay? I had no idea. So I let her lead the conversations, but gave her lots of opportunity to open up if that was what she wanted. It was a fine line to walk. Sometimes we want to be "normal", just do normal stuff. Other times we need to talk about those deep feelings and have someone listen and say "I care that you're hurting. I can't fix it, but I care".
My friend wanted to enjoy the time she had left, to really live, but she also had pain and low energy. Instead of getting her to do what I wanted to do for the day, I would ask her. We'd meet for breakfast every Sunday and go grocery shopping afterwards together. I lived across the street from the store, so we'd rest at my place afterwards before she went on the journey home. We made chocolate muffins and she dusted them with icing sugar and put them on the windowsil to cool. We watched the flowering tea together, pure delight on her face. We shared a delicious brownie together and she decided to have a second one all to herself. All these moments were precious. And I cherished every single one of them and still do.
But others were not so willing to do what she wanted to do and at the pace she needed to go at. One friend she'd known since elementary school called her up and asked if she wanted to go to the bar that night. My friend said she was too tired to go out. I would have said "movie night?", but this friend appparently just said she would go out without her. She was hurt. Didn't people realize she wouldn't be around much longer? Didn't people want to spend time with her? She concluded no one cared. But was this really the case?
Another group of friends wanted to stop by a mall on the way back from visiting her in the hospital, so they cut the visit with her short - it ended up being the last time they saw her alive. I was getting a ride with them, so I couldn't stay longer. I decided the next weekend to rent a car and go by myself so that I could spend that time with her and it ended up being the weekend she died. I got to be there with her family as she passed. All these other people arrived while she was dying and if I had relied on them I would have missed everything. I learned that I have to take initiative and not follow the lead of others if I am to have those meaningful relationships. I need to get in the drivers seat and not wait for someone else to do what I think needs to be done.
The night after she died some of us got together for drinks and some things were said that really bothered me. Someone said "she was hard to be around sometimes". Her exboyfriend and one of her best friends said "I just wasted six years on a girl who doesn't exist anymore". My heart, what was left of it that day, broke in half. Didn't these people care? Didn't they get that she was wonderful, that she's gone and it's horrible?
After processing all that happened, I've come to the conclusion that people say things that they don't really mean all the time when they don't really know what to say. Grief especially does this. We aren't taught in school how to grieve, how to deal with uncomfortable emotions, how to express our feelings and not judge them. I judged these people, when really they were lost and hurting too. They just kinda put their feet in their mouths. And that happens all the time when we are overwhelmed and don't know what to do.
So what do we do when someone is suffering and we don't know what to say or do?
Here is what I've learned:
1) Tell them you care, but you don't know what to say or do. It's okay to be honest and not know what to do.
2) Just be there. Listen. Follow their lead.Give them the opportunity to talk about deep stuff, but also give them the opportunity to just breathe and do silly stuff. Watch movies with them, colour with them, make dinner with them or for them. Just be with them.
3) Ask them what they need. Do they need someone to get groceries for them? Help clean up their place? Sit with them by their bedside and read to them from their favourite book? Sometimes they just want company. And sometimes they don't know what they need. But just hearing you offer can be huge.
4) Know when you are overwhelmed and tell them. Tell them when you think they need outside help, that it's beyond you to help with something so big. You can offer to go to a doctor's appointment with them to talk about this stuff. Be an advocate. Educate yourself on the illness if you can.
5) Take care of yourself. Seek out support yourself. I had therapy while my friend was dying and after she died. I knew I couldn't deal with it by myself. Self care is so important. You can't help others without taking care of yourself first.
What about when we're on the other side? What do we do to reach out to our friends when we feel alone and like we need support?
Here is what I've learned:
1) Think about who you're reaching out to. We all know those people who are supportive. If they've been there for you in the past, they might be there for you now. That said, they might not be. If that's the case, move on to someone else. Keep reaching out until you find someone who responds.
2) Be honest about what you need. Say something like "I just need someone to listen" or "I just want some company, I've been struggling lately with my health problems and I just need someone by my side. I don't expect you to fix it, I just need someone to stand by my side while I deal with this".
3) Seek professional help too. You could ask a trusted friend or family member to go with you for support.
4) Ask for help with the stuff that's overwhelming you - groceries, cleaning, cooking. People like to help and if they have a task they can help you with, it makes them feel good. It's a concrete way of helping that most people can handle. It's okay to ask for help.
5) Know that people care even if they can't be there right away or they say the wrong thing. This is a hard one, especially when you're depressed. Depression sucks the life out of you and tells you lies. People make mistakes, especially when they don't know what to say or do. Give them the opportunity to reach out to you again, but don't expect miracles. Some people will never "get it" and it's got nothing to do with you or your worth. Others grow. But, try to surround yourself with people who you think do get it on some level. Support groups are great places to make friends like this. Look into in-person support groups in your area, and also look online. There are some great online supports for all kinds of health issues. It's amazing to talk to others who share in your pain and "get it".
I hope some of these ideas help paint a picture of ways of reaching out to one another when illness is involved in your relationships.
And remember:
Never give up on someone with an illness. When "i" is replaced by "we", "illness" becomes "wellness".