When You're Told 'You Don't Need Pain Medicine' for Your Chronic Illness
Battling a chronic illness is like an unwelcome adventure with lots of twists, turns and dead ends. Just when you think you have everything under control, you discover there is more to learn. July will mark 11 years since I was initially diagnosed with Crohn’s disease. When I’ve discussed my symptoms and overall health with doctors, receiving a prescription for pain medicine, just in case a flare up occurs, was always a no-brainer. No questions asked.
This week was different. Instead of the doctor understanding completely and writing a script when I asked for Tylenol with Codeine and Zofran (for nausea), I was told the following: “My patients never need pain medicine. Your pain needs nothing more than two tums and an extra strength Tylenol.”
In the moment I held my tongue. In the moment I was so shocked I couldn’t find the words. But, a couple days have passed and now I’ve found them. How dare a doctor or a person for that matter, who has never experienced or endured what it feels like to have your intestines inflamed and your body literally fighting against you, begin to underestimate not only the pain I feel, but how I choose to handle it. I consider myself to have an extremely high pain tolerance— when you live it for years, you accept it;it’s your normal.
But, there are times when the pain strikes out of nowhere. There are times when you need something more to be able to sleep or get through the day so you can function like the rest of society and not be stuck on the couch. That’s what living with Crohn’s is. It’s about finding your own balance and managing your disease process in a way that doesn’t hinder your quality of life. Sure, I wish I didn’t have to give myself injections or take five pills a night with dinner — but if that’s what it takes to get out of bed every morning and feel my best, I’ll do it. Even when you feel completely fine, there’s always a piece of you every single day that wonders and worries whether that cup of coffee or that lunch is going to throw things out of whack. You never know how you are going to respond — to food, stress, excitement, exercise (just to name a few). Every. single. decision. is like Russian roulette with your insides.
Nobody knows when the disease is going to strike next. Since I underwent my first surgery in August which involved the removal of 18 inches of my intestines, I have felt amazing and symptom-free 90 percent of the time. But a few weeks back, those unwelcome debilitating gnawing pains returned.
I was home in Chicago with my fiancé and his parents. We had my hair and makeup trial and the food tasting for our upcoming wedding in June. I don’t know if it was the stress coupled with all the delicious, out-of-the-ordinary food or what, but I had to leave the table over the course of the meal three times. I was mortified and deep down, my mind began to race. What if—what if I get sick at our wedding? What if I’m in this bathroom when I should be enjoying the night? How will this work with a wedding dress?
That night the pain persisted — in a 24 hour period I needed three Tylenol with Codeine to get through. It was the first time I needed pain medication since surgery. It was a reminder that the disease is still a part of me and always will be. When I shared that story with my doctor and she brushed it off, words can’t describe the disappointment and anger I felt.
Here’s my advice:
Please listen: You are a gastroenterologist because you are passionate about helping those suffering with GI diseases. Even though you’re the expert, unless you have Crohn’s or Ulcerative Colitis yourself you truly don’t know what it’s like. Please be patient, don’t interrupt and realize you can learn more by listening to each patient’s unique story.
Show empathy: We realize you see countless patients and you may be desensitized to sharing news and explaining surgeries. However, please make us feel like we’re not just another number, not just a part of a different research study or more money in the bank. If we’re upset or need time to take something in, understand the news you are sharing has an impact on our health and is a test or a procedure we are going to have to go through and heal from. I found out I was going to need major abdominal surgery during a two-minute phone call. That doctor didn’t even take the time to visit me in my hospital room to break the news.
Hear our voice: If a patient expresses the need for pain medication or help, don’t laugh or make it seem like their ideas or hopes about not being off medicine someday are unattainable. Living with an inflammatory bowel disease is no laughing matter. Offer advice for ways we can manage the disease in a way we are comfortable with. There’s a way of explaining the risks without making the patient feel like they have some type of terminal illness.
Think of us as family: If I was your daughter or your wife how would you expect me to be treated? Would you recommend a biologic medication that has long-lasting side effects to a loved one? Would you advise her to handle a pain level of an eight with tums?
Be your own advocate: Just because you’re told you need a certain test or certain medication does not mean that’s the only option. Nobody knows your body the way you do. Listen to your body and how you are feeling. Follow your gut. It may steer you wrong most the time, but it can be trusted.
Use your words in the doctor’s office: As emotional as it can be to receive news or have difficult discussions with your doctor, don’t be afraid to stand up for what you believe in. Otherwise, you’ll walk out the door and feel like you were cheated.
Find a doctor who comforts you: Think of your doctor as a caretaker, someone who has your best interest and doesn’t look to you as just another patient. Bedside manner is really all that it’s cracked up to be. If you are uncomfortable during a routine visit, imagine how fed up you’ll feel in a hospital bed at your worst. It’s all about finding compassionate care.
Network and maintain relationships: Talk with fellow Crohnies and see who they recommend. There’s generally a consensus among those who’ve been in your shoes and “get it.” Check out hashtags on Instagram such as #Crohns and #IBD and you’ll instantly be connected with thousands of people who can serve as a sounding board. Be a part of the community and ask those people questions.
So guess what, Doc? It turns out your patients do need pain medication — not to abuse it, but to be prepared and have an improved quality of life with one less unknown.
The Mighty is asking the following: Describe a moment when you were at a hospital and a medical staffer, fellow patient or a stranger made a negative or surprising comment that caught you off guard. How did you respond to it? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.