By Sneha Dave
Advice on staying resilient.
There are really no words to describe how it felt to step outside the house and think that everything I'd gone through for the past few years had potentially ended. Although it was the end of many grueling years, it was the start of a new journey, and the start of new societal learning experiences.
It wasn't until my ulcerative colitis become aggressive that I became isolated from the society I grew up in. Even though I was diagnosed at age 6, my illness began to give me serious medical setbacks at the beginning of sixth grade. From sixth grade until about the middle of ninth grade, I lived a life that many would call completely isolated. Ulcerative colitis is a disease with devastatingly embarrassing symptoms, like frequent restroom usage and accidents. In my case, I became so weak that I needed assistance even to walk, especially stairs. A homebound and secluded life became a weight that brought my once talkative and bubbly personality to a halt for years. Although it has been two years since I transitioned to a new lifestyle, there are some things I've learned and continue to learn about how to get back to mainstream society after being chronically ill:
1. Interact with as many people as possible.
Although this may be obvious, it's much easier to say than it is to actually do it. I remember it took everything in me to start a conversation with friends and family with whom I had lost touch. The more I talked to people, though, the easier it became. Often, people won't understand your story – and that's OK, but the more attempts you make to converse with people, the more you come out of the shell.
2. Know that it will take some time. Be patient.
For some people, adjusting to society comes naturally. Butt for some individuals who are chronically ill, coming out of a societal isolation can be a challenge. For instance, there were moments when I returned to school full-time as a sophomore when the school environment felt overwhelming and caused me to be reserved. With patient effort, I was able to successfully integrate back into my social group.
3. Adjusting comes with stages.
There was a stage when I came home from school and was just angry because I couldn't handle school and the new workload I was expected to do. I was impatient, I struggled to cope with such drastic lifestyle changes and on top of that, the frustration of having a new ileostomy bag made my life harder to deal with. While there are worse scenarios than this, it's important to recognize that adjusting will not come in a week, a month or even a year. Looking back, there were several stages I went through before I recognized that I was becoming more comfortable with this "new" life.
4. Even though people around you can't see a transition, know it's a huge thing to have to go through.
People will never know the extent of your illness and how much it has impacted you physically and emotionally. Whatever disease it may be, coming back to the life you once called normal can prove to be more difficult than it seems as you step out of your illness. I learned this from the "shock" factor I experienced upon my return to school full-time during my sophomore year of high school.
5. Get involved with an organization you can relate to.
As soon as I got better, I immediately found ways to help out, and because I found there was not enough support for teens battling Crohn's and colitis, I founded the Crohn's and Colitis Teen Times – a nonprofit organization that helps teens with these two chronic conditions. This opened up opportunities to meet other people with Crohn's and Colitis. Furthermore, one of the easiest ways to get involved was with the local chapter of the Crohn's and Colitis Foundation of America. It was emotionally healing to help others, but it also gave me an opportunity to go to events I actually felt comfortable going to, and where I felt people understood my situation – or at least made an attempt to understand.
6. Don't wait for opportunities, because they can be life-changing.
A life-changing experience for me was when I was nominated to be a Riley Champion for Riley Hospital for Children. This honor may seem exciting to some, but for me it was also a defining moment. It helped me break the shell of silence I had for years, and it gave me a way to tell my story to others and relate to society.
7. Never, ever give up.
It's the small things that will be difficult to overcome, such as denial of opportunities for being sick or simply undesired results in spite of working hard while being sick. Everything that I've achieved so far, I've had to work twice as hard for. Generally, people have told me to take it easy, especially as I am still healing from surgeries and having procedures. I want to perform at levels that others are able to despite my situation. Never be disappointed if you are denied or don't get an expected result – it's happened to me and numerous others. The most admirable and successful people are those who have worked in spite of setbacks.
8. You can be physically strong. Give it a try.
In spite of all the battles you go through fighting your disease physically, it's worth trying to physically challenge yourself as much as your condition allows. I found that trying to get back in the game of tennis was a confidence booster. Though conditioning exercises often left me exhausted, they made me feel stronger and like I was getting back to a normal life again.
While most people may not think of adjusting to mainstream society as an actual problem, it certainly is – many people struggle to return to this "foreign" lifestyle. It is as imperative to be resilient in adjusting as it is to fighting a medical battle, because often this is harder than the physical pain of the illness. The most important aspect to keep in mind is that with time, your life will be put back together like a complete puzzle.