uplift

What to Say When: Someone has a Chronic Illness

Megan Needham is one of those people who just astounds you. She is well read, has received many academic achievements, has two adorable boys, oh, and she went to Georgetown for law school. She is one of those amazing forces for good.
She has so bravely shared her experience with us about the discovering she has a slow growing brain tumor. She has the words when we don’t and we are grateful for her willingness to let us learn from her.  
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On July 4, 2017, I woke up with my left eye swollen shut.  I was on vacation and knew I would need to drive from Utah to Oregon to get home, so we went to the emergency room in Logan, Utah.  When I told the doctor that I had been feeling substantial pressure behind my left eye for about 24 hours, he decided to check for a blood clot.  After a CT scan and MRI I was diagnosed with a brain tumor.  I was allowed to travel home to Portland, Oregon for treatment.  On September 19th I had brain surgery to remove my tumor and learned from the pathology report that I had a grade II oligodendroglioma–a slow-growing form of brain cancer that would eventually turn into a higher, faster-growing grade.  After meeting with multiple oncologists I have decided to treat any possible remaining cancer with a telezolomide chemotherapy regime for the next year in hopes that it will substantially delay or prevent any cancer from recurring.  Recovering from any type of brain surgery is a long process, and adding chemotherapy treatment on top of that is scary.  So many people have been exceptionally helpful, but some things people have said have also been difficult to deal with.  I’m sharing my observations as a brain cancer patient, but I imagine you could substitute just about any chronic or serious health challenge in here and people would have similar feelings.
Things Not to Say/Do
1. “What a blessing in disguise”–I heard this from a lot of people, especially right after my original diagnosis in July.  I am pretty sure I even said it about my own situation because there was an element of luck in finding a doctor who was willing to do the scans before I had a seizure.  But as I processed my feelings about having a brain tumor (and then my feelings about being told my tumor was cancerous and that I needed chemotherapy), I found myself getting really upset that anyone would call this a blessing.  Am I glad that I don’t have epilepsy?  Yes.  Am I grateful that I’m not having radiation?  Definitely.  Am I learning from my trials?  Yes.  But having a brain tumor is not a blessing.  Blessings are good things; just because something could be worse doesn’t mean the current situation is good.
2. “When I had surgery…”–Don’t compare.  Don’t even compare when you’ve had the same procedure done.  I went into surgery thinking that I was strong and would recover quickly because I had had surgery twice before and thought I knew how my body would react.  This surgery was much harder than I anticipated, and two and a half months later my recovery is slowly progressing.  I can’t follow the same advice that helped someone else recover from a different type of surgery.  My experience is unique and something that worked for me in the past or worked for someone else may not work in this situation.
3. “Everyone goes through something like this”–I don’t know why someone would say this, but it happened and it hurt a lot.  Brain surgery is the most physically challenging thing I have experienced.  I look at the people around me and see them doing things that are easy to take for granted, like bending over or lifting a child.  I understand that everyone experiences challenges, but being reminded of that when I am dealing with extreme pain, uncertainty, and discouragement doesn’t help me feel better.  And whatever challenges other people face, it’s not true that everyone will have to have brain surgery or ever know what it is like.  Similarly, I can’t say I know what it is like to experience other people’s challenges.
4. Forcing help the way you want to give help–We really appreciate the help people have given us.  Friends organized to bring us meals for six weeks after my surgery.  A dear, dear friend took my son for several hours a day for three weeks while we figured out a long term childcare arrangement.  People gave me rides in the five weeks I couldn’t drive.  My mom has spent several weeks by my side helping me in whatever way I need.  All of this has been incredibly helpful.  But occasionally people have been so eager to help that I have felt like my family is doing things the wrong way.  We’ve hired someone to clean our house, and we put our toddler in full-time daycare while I figure out simple things, like bending over (this has been really hard!), and more difficult things, like managing chemo.   This means we need a little less help around the house, but it also means that I have time, space, and mental energy available to recover.  It can be really good to offer specific help and perhaps it can be good to just do something without waiting to be asked, but sometimes people need to know who they can call for different types of help and then need the space to call when necessary.  The most helpful resource for us was receiving a list of friends who were available for different things at different times with all of their phone numbers.  This helped me know who to call for help, especially in emergency situations.  It also gave me flexibility to deal with doctors’ appointments, difficult emergency room visits (there have been a few), days when my toddler gets sent home sick from daycare, etc.  If you offer help to someone who is sick and they don’t call, don’t take offense.  It is much easier to streamline the help as much as possible when you are juggling so many doctors visits, but know that you may get called unexpectedly when there is an emergency.  We are so grateful for the many people who have come together to help us when we’ve needed it.
Things to Say/Do
 
1. “I’m so sorry”–This is always the right thing to say.  Being sick is awful.  I always feel compassion when someone says they are sad I’m going through this trial.
2. Reach out, even if it has been awhile–It was five months after my diagnosis before I felt comfortable sharing what was going on with a broad audience.  But when I did share, I received so many text messages, e-mails, and phone calls from friends from so many phases of my life.  I loved every time someone made the effort to reach out.  It made me feel more confident about reaching out to friends when I hear about their struggles too.
3. Prayers are welcome–There have been times, especially after surgery, when I couldn’t form very coherent thoughts and struggled to pray in any sort of logical way.  But the whole time I’ve been facing this struggle I have felt carried by the prayers of people around the world who have graciously added me to their list of people they pray for.  It has helped me take my prayers for others more seriously, and I have learned the amazing value of intercessory prayer.
4. Be understanding when the diagnosis seems to change–We’ve learned that medicine is more of an art than a science at times.  I had three different neurosurgeons essentially tell me that my tumor was not really a big deal, and then seemingly out of the blue I went to my neuro-oncologist and was told I should start chemotherapy.  We have realized that medical specialists don’t always talk to each other and get the story straight.  A surgeon can think one thing, and other specialists can vary with their opinions.  When someone shares their latest news, understand that it takes a lot of doctors’ visits and opinions in order to get the full story and figure out the right course of action.

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