Grief and inflammatory bowel disease. They don’t mix well. I can still remember getting a phone call in September 2012 that my grandma had been hospitalized, that night…I was in the ER, doubled over in pain.
When those close to me are in harms way, I have a difficult time compartmentalizing my stress and worry and not allowing it to impact my Crohn’s disease.
On December 22, a day before I was supposed to see my Grandma and days before Christmas…she passed away. I wasn’t able to say goodbye in person, but my mom put me on speaker phone and I was able to tell her how much I loved her and that it was “ok” to go to heaven. I told her to be my son’s guardian angel and to always give us signs that she’s with us. Through lots of tears, I told her what an incredible grandmother she was and what she meant to me. Minutes later, after my call, she died.
It pains me to write and to say those dreadful words. I have never been able to handle the thought of life without her. It’s overwhelming not to have my grandma here to talk with all the time, visit, share the holidays with and I’m heartbroken that she’ll never get to see Reid grow up. I’m also scared about dealing with this major loss and having it throw me into a tailspin. The last thing she would ever want, is for me to be sick. Each hospitalization, each flare, each setback, always hurt her heart. She hated to hear of any complications or issues. So, I know I need to be strong and reign this in…in her honor.
What can we do in times of extreme grief when we live with a disease that tends to ignite in a flare when stress or emotions are out of whack? What can do we do find calmness when all we want to do is scream to the heavens in anguish? What can we do when we know we have to go on and be healthy for our families, but struggle to manage our IBD—even with a combination of strong medications?
I’m writing this for both you—and for me (to be quite honest). I don’t have all the answers, but since being diagnosed in July 2005, I’ve experienced my fair share of heartbreak and stress. Here are five tips to take to heart when you’re going through something overwhelming.
- Be proactive. Sure, many of life’s hardships come without notice…but, that’s not always the case. My grandmother was diagnosed with lung cancer in September and was told she had a few months to live. I knew this was the inevitable, but that doesn’t make it any easier. Each visit and each moment we shared together these last few months, helped me come to terms with what was to come. I’ve had good days and bad…emotions are funny like that. Something will hit you—and you’ll cry from a memory and then other times you’ll laugh at something you recall. Hold on tight to the good times and the good memories.
- Deep breathing, meditation, warm showers. Exercise. You need to shut it off every day. Whether it’s for a minute or an hour. Take time to clear your mind—think of nothing…just focus on your breathing. This will do wonders for you. When I feel my symptoms start to kick in, I constantly remind myself to take deep breaths in and out, it helps so much. Go for a walk, go for a run, shoot hoops—do whatever it takes to release that negative energy and pain.
- Communicate with your support network. One of the worst things we can do is bottle up our emotions and deal with the pain internally. If you need to cry, cry. If you need a shoulder to cry on, hug those close to you. If you need to snuggle your dog or your baby longer, do it. You are not in this alone. We’ve all lost someone close to us. We all know how painful it is to experience the death of a loved one. Share your memories, make your loved one’s memory eternal.
- Think about what your loved one would want. Chances are, this person knew firsthand what a struggle life with IBD is. The last thing they would want is for you to be in pain, in the hospital or needing medical intervention. Be strong for them. Think about what they would tell you if you could hear their words as they watch over you. Find comfort knowing that they are with you, just in a different way. Look for the signs they may give you. My college friends recently came to town. One of the signs my friend gets from her mom are white feathers. She had just told us earlier that day. That night, at dinner, we sat down…what was over our shoulder, right next to our table…a Christmas tree made out of white feathers. We knew she was with us. Hold those signs close to your heart.
- If you sense a flare is brewing, don’t put it on the backburner. Earlier in my patient journey I would wait until the last possible moment to go to the hospital. This is not smart. Nip that shit in the bud. You know your body, don’t try and be a super hero. The longer you wait to seek help, the worse it’s going to get. Recognize when handling your symptoms by laying on a couch, eating a liquid diet and taking pain pills isn’t going to cut it. You don’t need to be a martyr.
Handling grief is never easy, coupled with IBD it can be unbearable at times. Take time for you. Do what you need to do to heal and find comfort in your loved ones’ memories.