Often times, illnesses prevent young adults from participating in things. Whether its having to miss classes for a flare or doctor's appointments or surgeries, or having to cut back on extracurricular activities due to fatigue or symptoms, there are limits that their peers aren't dealing with. Limits are no fun. Especially when those limits are from your own body, and you are a teenager who is trying to establish independence from your family. Chronic illness is like a step forward from your peers, one where you have to grow up all too fast and be aware of your body's every signal. It is also like a step back, where you have to continue to depend on your parents or family members to take care of you when you are sick, instead of functioning like a typical independent adult. All these steps forward and backward can leave patients dizzy.
While friends may have been able to study abroad, patients with a chronic illness may have to stay close to their doctors and hospitals where they receive treatment. While friends may have been able to enjoy a beer and play sports, patients may have had to avoid alcohol due to medications they are on. While friends may be able to travel after graduation or take time off after graduation, patients need to find a job with health insurance and never want to have a lapse in coverage to avoid a future denial. Since the "typical" age to be diagnosed with Inflammatory Bowel Disease is age 15-25, we hear from patients the feeling that they have missed out on these crucial developmental years.
When adult patients look back on when they were diagnosed, they may be faced with a long list of "what ifs", such as "What if I had been able to do everything I had wanted to do physically, like my peers?" College is a prime season for making friends, trying on a new identity, exploring new interests, taking road trips, backpacking the world, etc. All of these things can be severely impacted by someone who is dealing with a chronic illness diagnosis. There is a significant grief to process about the losses from chronic illness. And this grief is not a one-time thing, it can resurface at various times throughout the life cycle (throughout the week for that matter!) The important thing about addressing these losses, is having a safe place to process them, as well as to find ways to move forward. If you ever feel stuck in your grief, that is the time to reach out! Although it can feel very safe to isolate and not talk about your negative feelings towards your illness, grief is a funny thing in that you can't go around it, you have to go through it. From personal experience, my journey of grieving my losses is ongoing, non-linear, and ever-changing. One week I may be very in touch with the blessings from my illness, and feel the support of those around me. Another week, I may feel devastated and angry by yet another unpredictable loss of having to miss out on an activity I was looking forward to. The good news is that there are therapists who are trained to help with this, and there are many other patients out there who experience similar losses. Sometimes having a support network that includes others with your illness can provide an outlet to vent, as well as understanding from other people who are dealing with the same issues.
As for the what if's...those are not so easy to make disappear. They are part of the journey of being real about your illness, and something we may never get answers to. But in the meantime, there is help available, and the hope that flares don't last forever. There will be times of remission, and times where you can do more of the things you love. I saw a quote the other day that said "don't let a bad day make you feel like you have a bad life." I found this to be a great reminder on days when my illness is the worst, and it provides a bigger perspective on life. After all, we all have limited time here on the earth, we may as well enjoy it as much as we possible can!