People typically don’t enjoy talking about any illness or chronic condition they’re living with. They may not enjoy talking about how it feels to have it and the emotional roller coaster it brings to life.
There are millions of people living with colitis and not much awareness in the public or within the community. It’s important to know that anyone living with ulcerative colitis and is not alone.
The hardest lessons Caitlyn had to learn after being diagnosed with ulcerative colitis
Caitlyn Pilkington is a leader within her community. She shares her experience living with ulcerative colitis, including the emotional lessons and anxieties that come with the disease.
For Caitlyn, the two hardest lessons to learn when she first got diagnosed was one, to take care of her mental health as much as her own physical health, and two, she was always going to be more sensitive to stress than her friends and family.
Stress can be the worst enemy for someone with chronic colitis
Have you ever noticed that you get more anxious than other people around you? People with ulcerative colitis probably have reason to react more strongly to life’s stressors. It’s not your fault.
Ulcerative colitis can be very painful and unpleasant during flare-ups, and sometimes, even the slightest emotional or physical stressors could trigger this. These episodes can be traumatizing! Your mind and body then learn to dread these stressors as they come into your life because you remember what it did to your gut last time.
There might also be some science to why psychological stress can trigger these painful flare-ups. There is a small neurotransmitter known as serotonin that is a key player both in our emotions and in our gut. There probably is some link to the mind and gut, which could explain why stress affects people with inflammatory bowel disease so much. Scientists are still trying to figure this out.
The constant scare of whether or not you’re having a real flare
The uncertainty of whether or not you’re having a flare-up can keep you on edge all the time. Any little stomachache, gas, or discomfort can trigger your anxiety of an incoming episode. The worst part is you never know if it’s a flare-up or not, leaving you fretting about whether or not it’s “the real thing”. This is something other people never have to endure. For them, a stomachache is simply brief discomfort that will soon pass.
It can be hard to forgive yourself when you feel you’re over-reacting.
The constant worry of whether or not you’re sick can really put you under a lot of stress. For many of us, stress makes us seek support from the people we love and trust most. Worry can quickly become guilt when you feel like you’ve been burdening the people you love with your disease, especially when you start to feel like a broken record about it all.
Worse yet, constantly worrying about a flare-up and not having a real one can turn into emotional turmoil too. Every stomachache or symptom turn into the question: Am I over-reacting? Should I just ignore this? What if I ignore this and it turns out I needed to get help sooner? You start to blame yourself for letting the stress get to you. You start wondering if your anxiety is triggering more flares. Is this disease your own fault?
It’s hard to forgive yourself about your constant anxiety. But this is such an important thing to do both for your mental and physical health. The stress and worry itself keeps you from healing. Not forgiving yourself can make you more distraught and propel your disease. It’s a vicious cycle that we need to work hard to fight.
Sometimes, you get angry at your condition
At some point, life itself doesn’t seem fair. You get angry that you have to live with this pain and why? You never did anything in your life to deserve this. It’s easy to lose hope and feel beat down, especially if your health takes a turn for the worst. Having regular flare-ups and failed treatments can be exhausting. You’re angry but there’s no one to be angry at. It can be hard not to snap at your family and friends with all this pent up emotional pressure. How can we help ourselves cope with this anger? It can get overwhelming and you may start to feel helpless.
It’s easy to feel ashamed about your condition.
There are many social media and online forums that people turn to so they can share their anger and pain. A lot of people still feel too ashamed to use this. They choose to hide the things happening to their body because we all know it can feel embarrassing.
Then, you sometimes feel bad about how you feel. You don’t even have it as bad as the next guy. Maybe you know someone who had their entire gut removed while you still have yours, or maybe you have fewer flares than the patient in the next bed over. No matter what, someone always has it worse than you. So you start to feel guilty about how angry and ashamed you feel about your condition when you know that it could be much worse. No matter if you’re suffering, someone’s suffering more. Does that make your suffering any less valid than your neighbor’s? These are questions and sentiments that can plague your mind and create an unhealthy state for both your mind and your body.
It’s time to accept
All these emotions and feelings you experience: Try to accept them. It’s easier said than done. A magic pill or exercise for mental health simply doesn’t exist. It’s hard work. But the first road to healing is to accept yourself and allow yourself the chance to deal with your emotions in a healthy way. Taking care of your mind will help take care of your colitis. Though it’s a chronic disease, an unhealthy mind can only make things much worse.
One of the most important things to do is to adopt a sense of community with others who live with ulcerative colitis. Things are never done better alone. Listen to each other’s stories and share your own. Raise awareness in the public, but also within this small community. Knowing that someone else had gone through the exact same struggle can really make a difficult journey so much easier. Patient stories and anecdotes serve as guides.
It’s time to stop hiding from our needs. We need to be open about what is happening to our bodies and our minds. There are millions of other people who are going through the same thing, yet very few are brave enough to step forward and share their story. It’s sad to know that the lack of awareness has made it difficult for people to get the help that they need.
The future is bright. There are now many more awareness campaigns out there to help people learn about ulcerative colitis, whether you suffer from IBD or not. Educating people about the disease can only help remove any stigmas or negative sentiments about people who have this disease. Social media and online forums have never been more accessible and popular. This makes it so much easier for stories from around the globe to be shared quickly with the people who need to hear them. Simply knowing someone else has gone through the same thing can really bring so much inner strength. You can help someone find the energy to fight on.