'It's Not Personal': When Chronic Illness Forces You to Take a Rain Check

This article was created in partnership with AbbVie.

When Jess Geddes, 31, was a teen she spent a lot of time on the toilet complaining to her parents of stomach aches. Her family doctor wrote it off as teen angst and nerves, until another doctor suggested a blood test, which along with further examination eventually led to Geddes’ diagnosis of Crohn’s disease at 15 years old.  

Crohn’s disease and ulcerative colitis are chronic inflammatory bowel diseases (IBDs) that inflame the lining of the gastrointestinal tract and disrupt the body’s ability to digest food, absorb nutrients and eliminate waste in a healthy manner. Symptoms often include abdominal pain, severe diarrhea, rectal bleeding, and weight loss.  

“It was really hard to talk about,” Geddes told VICE. “It’s embarrassing and not something you want to bring up at, like, the first week of school. I’d basically just tell people, ‘I have a chronic illness that makes me go to the bathroom a lot’ and leave it at that.”

After trying several options that were not right for her, Geddes discussed the risks and benefits of other treatments with her doctor. Following their conversation, she got the help she needed and is now in remission, which means, generally, she has more control over her urgency. A drug that’s helped people like Geddes is HUMIRA® (adalimumab). HUMIRA® is a prescription medicine used for treatment of moderate to severe Crohn’s disease in adults and children six years of age and older and moderate to severe ulcerative colitis (UC) in adults and children five years of age and older. HUMIRA is a TNF blocker medicine that can lower the ability of your immune system to fight infections. You should discuss the potential benefits and risks of HUMIRA with your doctor.

But before treatment, it took years of Geddes navigating tricky social situations, canceling plans with friends, and finding the courage to have difficult conversations.

“I couldn’t drink [alcohol] past a certain amount or go to Starbucks because I couldn’t have coffee,” she said. “And I’m always hyper aware of whether there’s a bathroom, so dates in parks or outdoor spaces aren’t comfortable for me.” 

Dan Rosen, who’s had Crohn’s disease for 24 years, knows the feeling of missing out. As a teen, just as he and his classmates were embarking on a canoe trip, he started getting stomach cramps that required his parents to pick him up. “My friends all went on this trip, and I ended up in the hospital,” he recalled. 

Rosen works in the film industry, which requires long hours with few bathroom breaks. He’s found himself struggling through abdominal cramps and rushing off set, or making up excuses about bad traffic when his illness found him running late anywhere. While a global pandemic has made employers more sympathetic to health issues, there’s still a long way to go, and workers battling persistent illnesses are often required to provide proof. 

 “Not everyone will understand, and the emotional labor of having to disclose your illness to every relevant person just to try to get workplace accommodations can be a lot,” Kat Singer, a therapy provider and registered social worker, told VICE. “That takes a lot of energy, and eventually you’ll find yourself prioritizing work performance and just survival activities over everything else, which can really erode your social ties.”

If any of this rings true for you—having to cancel plans, seeking accommodations at work and engaging in challenging conversations with everyone around you—no matter your chronic illness, here are some things to keep in mind.

It’s better to say something than nothing at all

According to Adar Cohen, a mediator and facilitator specializing in helping people have tough conversations, evaluate the hidden costs of avoiding conversations, especially in strained relationships.

“The conversation may be difficult, uncomfortable and awkward, but those feelings are pretty temporary. Avoiding a conversation, which so many of us tend to do, feels like we're sparing ourselves and others discomfort, but we’re actually continuing to carry around the weight of disappointments or perceived slights, or even deep misunderstandings that can strain a relationship over time,” he said. “I think it's really important in a moment where we're faced with a difficult conversation to ask ourselves: Could things get a whole lot easier for me if I went ahead and had a conversation?”

 That answer is usually yes.

Give yourself some credit

Most of us set the bar high for ourselves—how we perform at work, being there for family and friends—the hustle culture is real. Yet, there is a battle between expectations and reality for people with a chronic illness like Crohn’s disease or ulcerative colitis.

“We live in a society that basically tells us that our bodily concerns are not important and that they shouldn’t get in the way of living our lives,” Singer said. “But that leaves people feeling exhausted and depleted, which is why self-compassion is really important. Self-compassion affects the outcomes of everything, from broken legs to diabetes to breakups.”

To cope, Singer suggests seeking out a support group. “It can be really helpful having people in similar situations to lean on, learning about other people’s struggles and transferring knowledge that happens in communities,” Singer said. “It’s important to cultivate these connections.”

Set aside special time to have a conversation

“I always encourage people to set the conversation apart, which means scheduling it,” Cohen advised. “Certainly, if you’ve been avoiding having the conversation, you can end up having it in a moment where it spills over or where it suddenly becomes unavoidable. What kind of shape are you in at that moment? You’re stressed, uncertain and afraid.”

Tough conversations rarely go well when we’re in a heightened state, so talking to a friend when they’re still upset that you’ve cancelled on them again might not go the way you hope. Instead, set that conversation with them apart, and explain why it’s difficult living with a chronic illness, like Crohn’s disease or ulcerative colitis, once heads have cooled. 

“It’s important that everyone comes to the conversation on equal footing and in a somewhat balanced, steady space rather than it sort of bubbling over,” Cohen said. 

Come to the conversation prepared

At the start of the conversation, it’s perfectly fine to let the person you’re talking to know you’re looking for compassion and not advice.

“Ask for them to just listen,” Kelly Alexander, a therapist who works with patients living with persistent pain, told VICE. “Often, people go straight into fix-it mode. They’ll tell you about an article they read and something a friend-of-a-friend did that worked for them.” 

If you’re on the receiving end of a friend divulging their chronic illness, focus on being a good listener and holding space for this tough conversation. “Feel free to ask open-ended questions, especially if they sincerely and effectively invite your counterpart to share their concerns, hopes and feelings,” Cohen said. “Then listen.” 

You can’t be responsible for how someone reacts

“You are responsible for what you say, but you cannot be responsible for how someone understands or receives what you’re saying,” Singer said. For many people, new information can be a shock, especially when it’s health related. There are countless people struggling with chronic illnesses around the world, yet for those with Crohn’s disease or ulcerative colitis, it is not always understood or discussed in circles outside of healthcare. “It might take a person a little bit longer to process what you’ve told them. It helps to be patient around that.”

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Please see Humira Use and Important Safety Information below.

For more information about a treatment option, visit HUMIRA.com. HUMIRA is a biologic that blocks a source of inflammation that may be contributing to symptoms of Crohn’s disease. HUMIRA is not right for everyone. Only your doctor can decide if HUMIRA is right for you. Individual results may vary.

HUMIRA USE

• HUMIRA is a prescription medicine used to treat moderate to severe Crohn’s disease (CD) in adults and children 6 years of age and older.
• HUMIRA is a prescription medicine used to treat moderate to severe ulcerative colitis (UC) in adults and children 5 years of age and older. It is not known if HUMIRA is effective in people who stopped responding to or could not tolerate anti-TNF medicines.

Important Safety Information About HUMIRA® (adalimumab) 

What is the most important information I should know about HUMIRA? 

You should discuss the potential benefits and risks of HUMIRA with your doctor. HUMIRA is a TNF blocker medicine that can lower the ability of your immune system to fight infections. You should not start taking HUMIRA if you have any kind of infection unless your doctor says it is okay.

• Serious infections have happened in people taking HUMIRA. These serious infections include tuberculosis (TB) and infections caused by viruses, fungi, or bacteria that have spread throughout the body. Some people have died from these infections. Your doctor should test you for TB before starting HUMIRA, and check you closely for signs and symptoms of TB during treatment with HUMIRA, even if your TB test was negative. If your doctor feels you are at risk, you may be treated with medicine for TB.
• Cancer. For children and adults taking TNF blockers, including HUMIRA, the chance of getting lymphoma or other cancers may increase. There have been cases of unusual cancers in children, teenagers, and young adults using TNF blockers. Some people have developed a rare type of cancer called hepatosplenic T-cell lymphoma. This type of cancer often results in death. If using TNF blockers including HUMIRA, your chance of getting two types of skin cancer (basal cell and squamous cell) may increase. These types are generally not life-threatening if treated; tell your doctor if you have a bump or open sore that doesn’t heal. 

What should I tell my doctor BEFORE starting HUMIRA?

Tell your doctor about all of your health conditions, including if you:

• Have an infection, are being treated for infection, or have symptoms of an infection
• Get a lot of infections or infections that keep coming back
• Have diabetes
• Have TB or have been in close contact with someone with TB, or were born in, lived in, or traveled where there is more risk for getting TB
• Live or have lived in an area (such as the Ohio and Mississippi River valleys) where there is an increased risk for getting certain kinds of fungal infections, such as histoplasmosis, coccidioidomycosis, or blastomycosis. These infections may happen or become more severe if you use HUMIRA. Ask your doctor if you are unsure if you have lived in these areas

•  Have or have had hepatitis B
• Are scheduled for major surgery
• Have or have had cancer
• Have numbness or tingling or a nervous system disease such as multiple sclerosis or Guillain-Barré syndrome
• Have or had heart failure
• Have recently received or are scheduled to receive a vaccine. HUMIRA patients may receive vaccines, except for live vaccines. Children should be brought up to date on all vaccines before starting HUMIRA
• Are allergic to rubber, latex, or any HUMIRA ingredients
• Are pregnant, planning to become pregnant, breastfeeding, or planning to breastfeed

Also tell your doctor about all the medicines you take. You should not take HUMIRA with ORENCIA® (abatacept), KINERET® (anakinra), REMICADE® (infliximab), ENBREL® (etanercept), CIMZIA® (certolizumab pegol), or SIMPONI® (golimumab). Tell your doctor if you have ever used RITUXAN® (rituximab), IMURAN® (azathioprine), or PURINETHOL® (mercaptopurine, 6-MP). 

What should I watch for AFTER starting HUMIRA? 

 HUMIRA can cause serious side effects, including:

• Serious infections. These include TB and infections caused by viruses, fungi, or bacteria. Symptoms related to TB include a cough, low-grade fever, weight loss, or loss of body fat and muscle.
• Hepatitis B infection in carriers of the virus. Symptoms include muscle aches, feeling very tired, dark urine, skin or eyes that look yellow, little or no appetite, vomiting, clay-colored bowel movements, fever, chills, stomach discomfort, and skin rash.
• Allergic reactions. Symptoms of a serious allergic reaction include hives, trouble breathing, and swelling of your face, eyes, lips, or mouth.
• Nervous system problems. Signs and symptoms include numbness or tingling, problems with your vision, weakness in your arms or legs, and dizziness.
• Blood problems (decreased blood cells that help fight infections or stop bleeding). Symptoms include a fever that does not go away, bruising or bleeding very easily, or looking very pale.
• Heart failure (new or worsening). Symptoms include shortness of breath, swelling of your ankles or feet, and sudden weight gain.
• Immune reactions including a lupus-like syndrome. Symptoms include chest discomfort or pain that does not go away, shortness of breath, joint pain, or rash on your cheeks or arms that gets worse in the sun.
• Liver problems. Symptoms include feeling very tired, skin or eyes that look yellow, poor appetite or vomiting, and pain on the right side of your stomach (abdomen). These problems can lead to liver failure and death.
• Psoriasis (new or worsening). Symptoms include red scaly patches or raised bumps that are filled with pus.
  
  Call your doctor or get medical care right away if you develop any of the above symptoms. 

Common side effects of HUMIRA include injection site reactions (pain, redness, rash, swelling, itching, or bruising), upper respiratory infections (sinus infections), headaches, rash, and nausea. These are not all of the possible side effects with HUMIRA. Tell your doctor if you have any side effect that bothers you or that does not go away.

Remember, tell your doctor right away if you have an infection or symptoms of an infection, including: 

• Fever, sweats, or chills
• Muscle aches
• Cough
• Shortness of breath
• Blood in phlegm
• Weight loss
• Warm, red, or painful skin or sores on your body
• Diarrhea or stomach pain
• Burning when you urinate
• Urinating more often than normal
• Feeling very tired

HUMIRA is given by injection under the skin.