Crohn’s disease; An Invisible illness

by CherryBlossom on May 9, 2016 - 9:04am

Many diseases have symptoms that are visible to the eye like cancer, Parkinson or muscular dystrophy. The people who are affected by these diseases tend to be noticed by the population and attract unwanted stares. Although these people can fell like they are being pitied or judged, having a visible disease has its advantages or may I say, having an invisible disease has its disadvantages.

Often times, when people are aware that someone is sick, they start treating them differently, branding them with the “sick” status. Although this can be very annoying for the labeled person, it can also be very helpful in situations where the symptoms are painful and help is needed. On the other hand, people with invisible diseases, that is, illnesses that are not visible to the eye like mental illnesses, multiple sclerosis, digestive disorders, chronic fatigue syndrome, heart conditions and rheumatoid arthritis, are portrayed as normal functional societal beings. However, they do not always function as such. In our modern world society, appearances are very important and therefore, people who look normal but do not act in the same manner are judged. In many cases, people do not believe that the person is ill and believe that they are making it up. They can be judged at school, at work or by their friends for being often absent.

For example, Milly Banks, a 23 year old who has been has been living with Myalgic Encephalomyelitis and Fribomyaglia, two invisible illnesses, for 14 years now has been often misunderstood when she was young. It took ten years before the doctors officially diagnosed these illnesses. During the immense period of time where her diseases where not officially recognized, Milly had difficulty convincing others that she was truly sick. She would get detentions at school because they didn’t believe she was ill. (1)

Unfortunately, because of the lack of understanding from others, many people with invisible illnesses “attempt to act in ways that are considered normal or avoid situations that may result in suspicion of an illness˝ (2). However, pretending not to be ill is hard work. It can lead to loneliness and pain. That is why, a few years ago I have decided to give a voice to my invisible chronic illness, Crohn’s disease, which is a disease “that inflame the lining of the GI (gastrointestinal) tract and disrupt your body’s ability to digest food, absorb nutrition and eliminate waste in a healthy manner” (3).

I have been diagnosed with Crohn’s disease at the age of 12 a few weeks before I entered high school. Luckily, after having lied around the house in pain with no energy during the summer, the doctor had prescribed corticosteroids for me, which gave me the necessary energy to attend my first day of classes. During the six years I have lived with Crohn’s disease, I have had many ups and downs and have tried a multitude of treatments. The hardest part however, was being judged because people did not understand my condition. When I entered high school I had lost so much weight many thought that I was anorexic. I also had to be very careful of my diet because I could not digest everything. People tend to be judgmental and give their unwanted opinion. This was the case for me as my fellow colleagues liked to look at my food and pass comments on how little I ate or how small I was. Also, they would mention my missed school days, days I was skipping due to my multiple appointments with specialists. At one point, I reached a tolerance threshold and decided to explain my situation to the people who were misjudging me. Unsurprisingly, their judging turned into concern for me, which at first was not what I had wanted as an outcome. Hopefully, this changed with time and these people became my friends.

It is particularly difficult to grow up with an invisible disease because of the identity crisis. It is hard for me to know how much information I should tell about my disease to the people I meet. It is always a dilemma between wanting to be seen as a sick person or a normal person and the benefits and difficulties associated with both. When people are aware of my disease, I feel like they are not interested in me anymore but in my illness. They always ask me how my health is doing as a primary subject of discussion. Even though it is polite, it is annoying to be seen as the sick kid and not just for who I am. On the other hand, not telling people that I am sick can lead to misunderstandings and judgments, which I believe are worst. It is relieving to know that you have a few friends and teachers or employers who are aware of your condition and are willing to help when needed.

This is part of the reason why, last year I have decided to become a spokes person for Cronh’s and Colitis Canada across Québec. The other reason is because talking about a secretive burden is liberating. I decided to talk about my illness in the media to raise awareness of these two diseases, Crohn’s and Colitis, and perhaps even influence other teenagers and young adults to step out of the dark.

Last year, I initiated the gutsy walk on the south shore of Montréal. This walk is a fundraising event to help fund research to find a cure for these diseases that are currently incurable but treatable. A total of 10 000 $ was amassed during the events premiere. Because of its success, I am helping to organize this year’s walk, which is being combined with a yoga event. The event is taking place on June 5th in Saint-Bruno. More information is available here

Since last year’s event, the number of followers of the Montérégie’s Facebook page is growing. I try to update the page as much as I can to inform people on the events that are being hosted for diagnosed patients like webinars or conferences. We also try to publish useful information, news and scientific discoveries on the diseases as well as provide the necessary information to our fundraising events throughout the year.

To add to the volunteer work I have already been doing for Crohn’s and Colitis Canada, I have decided to do a video to promote this year’s gutsy walk and yoga event. I have used videos from last years walk and some photos from last summer’s outdoors yoga event. In this video, I briefly explain the event and tell my story to explain why the cause is important. It is important that I do this video because Crohn’s and Colitis Canada is a non-profit foundation based in Toronto. They do not have a French gutsy walk video nor is their French website up to date. I think that it is important to have the information about Crohn’s and Colitis accessible in French for the Quebecers who do not have the chance I have at being bilingual.   

Also, in our modern technology world, videos are easy access and I know that once I publish it, the video will be shared and many will be capable of viewing it. In a way, this idea depends on new power to work, which is made by many. Every one contributing to sharing the information of the gutsy walk will increase the power of the event and help raise awareness of these diseases.

Many young adults with illnesses who want to tell their stories and raise awareness use the idea of new power to help them to be heard. I have, by telling my story in local newspapers and radio stations and by creating a Facebook page that is increasing in followers. Others, like Milly that was mentioned earlier, decided to use her photography skills to create an exposition  of people with invisible diseases to prove that even though they where sick they looked like normal, healthy human beings. Another good example of a youth trying to make a change is Jessica Grossman the founder of Uncover Ostomy, which is a blog dedicated to raise ostomy awareness.

This shows the increasing need for young adults with invisible chronic illnesses to speak up and come out from hiding. We all want to be understood.

Sources

(1) Jenkins, Robin.  “Cheltenham woman highlights 'invisible' illnesses through photography exhibition”.  Gloucestershire Echo. March 30, 2016. Web.

(2) Journal article: Youth with Chronic Illness Forming Identities through Leisure written by Snelgrove, Ryan in the Journal of Leisure Research 47.1  (2015): 154-173

(3) Crohn’s and Colitis Canada. “What are Crohn's and colitis?” .Web

 

Comments

Your text is very well written and clearly conveys how it is to live with Crohn's disease. I think you are extremely courageous to do this because it is sometimes hard to talk about such intense problems that you possibly have in public. I like the stories you talk about because it shows how the disease affect people and how they live with it as you do. The fact that you live with it, talk about it openly and also get involved in the fight and volunteer work against the disease and supporting people having the disease is remarkable and has to be noted. You should continue to be involved so that they keep getting money to support the research against the disease. I did my paper on the health care system and it is highly important for me that there is medical achievements being done here in Quebec and Canada, especially with diseases such as the Crohn's one. You should take a look at how Cuba eliminated the mother-to-child transmission of HIV and syphilis in the country.

First of all, I would like to congratulate you for having the strength to be so open about living with Crohn’s disease. I know many people in my life who suffer from this as well and I know how hard it is to live with it. I find that your volunteer work with organizations; speaking about this issue is very inspirational and I wish that more people who also suffer from this would not be ashamed and be able to talk about it openly to help others. I hope that you share this with other people in order for others to see how it is to live with it and be inspired to discuss this issue if they deal with it as well.