The phrase “it takes a village” comes to mind when I think of the support I’ll need in the months ahead. I’m very lucky both in the village I was given (my family) as well as the one I’ve worked hard to cultivate with friends over the years. One particular individual is my friend Maggie. We met in 2007 through a mutual friend and book lover for an impromptu breakfast when I lived in Los Angeles. It was love at first sight. No matter the distance between us, we both invest and prioritize our friendship. And I couldn’t have made it through the last nine years with MS or the upcoming months of HSCT without her by my side.
I asked Maggie to share her experience and tips with everyone to provide an alternate perspective into life with chronic illness and how to support someone you love during difficult times.
I’ve been friends with Carolyn for more than 17 years — before MS, throughout diagnosis and now as she embarks on HSCT. She is the same person, with or without the diagnosis. Nowadays, she just has more sparkly mobility aids and eats less gluten (well, zero gluten).
My coping mechanism for difficult things is humor, mostly dark humor (the darker the better). It helps me talk about the hard stuff and manage my emotions surrounding scary things. An MS diagnosis was scary for Carolyn, and it was also scary for me. Watching your friend deteriorate physically is scary, watching them struggle emotionally is scary, but you are both capable of handling it and you’re stronger together.
When Carolyn was first diagnosed, I had to figure out ways to support her and not make it about me. Yes, I was upset about my friend being diagnosed with a life-altering disease and yes, it was going to impact our relationship in some ways, but that was not the time to throw my own pity party. Does this mean our friendship is all about Carolyn? Of course not. But during her initial months of MS, the scale tipped in her direction.
So what could I do from afar that would help Carolyn? Even though I wanted to be kept in the know and try to control things (hint: control does not equal helpful), it was better for her if I asked what she needed. I wanted to hear from her what would be helpful. There are so many things that can be shipped or delivered. When all else fails, laughter is the best medicine. If you don’t know what to provide that is helpful, make them smile. Get creative!
When she started her first disease modifying medication after diagnosis, the accompanying marketing material made her annoyed, angry… ok, downright enraged. The material stated that when giving yourself a shot three times a week you should plan a reward and suggested saving your favorite TV show or having a small bowl of ice cream. I headed to the dollar store and bought a slinky, silly putty, Abraham Lincoln Band-Aids, stickers and other random things to make her smile. I individually wrapped each ridiculous gift and wrote REWARD on them. A few days later she opened a large package full of items and proceeded to open one reward with each shot for months.
Several years later, I was visiting Ohio from Los Angeles when she had a relapse which meant I got a front row seat in the infusion room at the Mellen Center at Cleveland Clinic. It wasn’t how I pictured our weekend together kicking off, but the important thing was that we were together. I unwrapped jolly ranchers and provided inappropriate jokes and snarky commentary as they pumped IV steroids into her veins. We are all smiles in the photo above despite the crappy situation.
Until a few months ago, our entire friendship was long distance but I recently relocated from Southern California to Northeast Ohio (just in time it would seem). I picked Carolyn up from her infusion and doctor’s appointment the day she first learned about HSCT. I had prepared dinner as well as dessert as she has an insatiable sweet tooth. She got in my car, rather stunned and overwhelmed, and through tears shared the words “bone marrow transplant” with me.
Pro tip: if food is your friend’s love language like it is for Carolyn, take care of a meal. Sometimes, taking the decision making responsibility from someone is the nicest gift in the world. If you can’t cook a meal, Door Dash and Uber Eats work. You are relieving your friend of the daily struggle of what to eat for dinner.
They are not their illness
Your friends with chronic illness are not fragile. Don’t treat them like they will break. The last thing most of them want is to feel like the only thing they are now is their (insert malady or illness). It is one part of their lives that may impact a lot of other parts, but they are NOT their disease or diagnosis. It is the same for anyone struggling with something—it is just one part of the sum.
Do I treat Carolyn any different now than I did when we first met? Yes, but it has zero to do with MS. We have grown up together over the many years we have known each other, and in all honesty, we treat each other less politely now — the gloves are off. We call each other on our shit. We tell each other the hard stuff. We talk through any issue we have and clear the air when necessary. Carolyn’s MS doesn’t negate or outrank a medical issue (or any other issue) I have. We both can have rough days. We both can have great days and we both can have meh days. We are still there for each other, it is not one sided.
I still need my friend, and I expect her to show up. Do I need her to be able to go on a hike with me? No, but I do need her to talk me off a ledge when I am having a work/family/relationship issue. Do I need her to be able to stand for long periods of time to hang out? No, I will happily sit on the kitchen floor with her while we cook dinner together and she needs a break from standing. Do I need her to have energy every day of the week? No, I just need her to be able to spend hours on my couch watching horrible Netflix reality shows. Our physical friendship might look a bit different than we thought it would look, but that doesn’t make it any less of an amazing friendship.
I’ve compiled the below tips and tricks I’ve found helpful when navigating a friendship/relationship with a person who has a chronic illness:
- Treat them like a normal human—we all have issues we are dealing with and your friend or family member is NOT their illness
- Ask them how they feel or if they need something—do not assume or insert yourself into a situation that is unwarranted
- Listen when they tell you their boundaries and respect them
- Ask questions
- Be patient
- Keep the relationship reciprocal—you have needs too
- Ask about the issue, don’t walk on eggshells
- Never take cancelling of plans personally—fatigue is no joke
- Keep inviting them to things, even though they may decline more times than accept—people still want to feel wanted and included and the invitation matters
- Talk about YOUR feelings—we all have them
- Call them out if they are being ridiculous—just because someone has a medical issue, doesn’t mean they can’t act like a toddler sometimes
- Be a part of their village—you don’t have to be the savior or Florence Nightingale to be a good friend and caregiver. Share the responsibility to support your friend
- Make your friendship about illness—there are lots of other things to talk about or focus on
- Make their illness about you—you have enough stuff in your own life to manage
- Pretend like they don’t have an illness (it is there, but it is not anyone’s sole focus)
- Treat them like an invalid—they have a voice and can tell you what they need
- Make assumptions (yes, this is in the “do” category, too—it is important)
- Tell them about a friend whose mom or sister’s cousin’s coworker had “insert illness” and is either fine or died – I am continually shocked when people think this is helpful
- Share how your stubbed toe, child birth experience or paper cut is JUST like what they are experiencing
- Tell them that this workout/diet/herb will cure their illness/disease
- Tilt your head, affect a concerned tone and say “but really, how arrrrrre you?“
- Compare your being tired with understanding chronic fatigue – it’s not the same
This is life and it’s pretty messy, sometimes awful and oftentimes beautiful. Things happen that may shift our perspective or challenge us. No matter the situation, friendships change and evolve. The question is, how much are you open to changing and evolving with them?
Emily McDowell is a writer, artist and blogger I adore and she has created many amazing cards. One that sticks with me says, “Behind every great woman is another great woman replying to her frantic texts in the middle of the night. Thank you for being that woman.” Setting gender aside, we all need a person who embodies this spirit and being able-bodied has nothing to do with it. For me, Carolyn is that person and I will take her in whatever messy form she is embodying that day. Because I know, I am just as messy.