Don't let your Crohn's win. Beat the Crohn's.

Friday, November 14, 2014

Health Discrimination

"If we wish to avoid being numbered amongst the oppressors, we must be prepared to rethink even our most fundamental attitudes" (Peter Singer "All Animals are Equal").

Some people argue that feminism is the last discrimination left for us to conquer. However, as Singer points out in his paper, we should never feel comfortable saying no forms of inequality still exist. In my Biomedical Ethics course, I realized there is a very real discrimination against those that live with a disease. I doubt this occurs intentionally; rather, people are ignorant that certain issues for which they argue display an underlying belief in the inequality between the healthy and those with an illness.

In the future, genetic selection can become a possibility for those considering to have a child. In this, doctors would create several viable embryos. At the eight cell stage, physicians study the genetic make-up of one cell. Then, a genetic map shows parents the risks of each potential child for developing  various diseases, or other superficial qualities such as eye color. Parents may choose which child comes into existence.

Some philosophers argue that this technology brings an obligation to the parents to genetically select all their children. "Couples who decide to have a child have a significant moral reason to select the child who, given his or her genetic endowment, can be expected to enjoy the most well-being" (Savulescu and Kahane "Procreative Beneficence). In a debate on this topic, Savulescu argues that society would overall experience less suffering in the world should less illness exist.

Without a further look, this reasoning seems to make obvious sense. However, one must remember that this argument is to genetically select people before they come into the world. Imagine someone inserting race, gender, religion, etc. into this reasoning. Overall, males enjoy a better quality of life, therefore we should genetically select only for that gender. Society would then experience a decrease in suffering. Intuitively, we know this reasoning does not add up. I challenge you to see similar discriminatory qualities in the argument when you replace gender with health qualities. By selecting against specific illnesses, parents boldly state that people living with that disease are not worthwhile and do not wish to bring another person with that illness into the world.

A non-identity problem also occurs. An advocate for disability and disease, Elizabeth Barnes, writes, "Why choose negative selection? It can't be to prevent local harms, because it only makes sense to prevent local harms to a specific individual. But there is no individual that you are preventing harm to" (Barnes "Disbility, Minority, and Difference"). Take into consideration, genetic selection does not increase overall quality of life for any person (perhaps the parents, but I think it is unfair to discriminate so the parents can have less medical bills). Selection does take child x with disease x and then give you child x without the disease. Rather, parents choose to bring child y into the world. Implicitly, the parents have chosen child y because they believed child x with disease x would not have as good of a life. We can see that no benefit occurs to child x because child x does not exist. As well, child y does not benefit because child y had no disease in the beginning.

We run into many issues at this point. Savulescu's argument stated that parents should genetically select for healthy children because they would experience better lives. However, we see that no one experiences an overall better life. Some argue that the better life occurs throughout society. They say the world would experience less suffering, so genetic selection would ultimately benefit everyone.

I hope everyone can see the problem here. This states that by not having people exist that have an illness, the world would overall be better. People that believe genetic selection would decrease suffering wish those with illnesses out of existence. Child y makes the world better than child x. Most of us know at least one person managing an illness that is an inspiration to us or even to a large population of people. Could you imagine had genetic selection been possible centuries ago and we selected out the people who we assumed to have "less good" lives? Abraham Lincoln who was believed to have depression, Isaac Newton who is thought to have some form of autism, and many people that we admire today that manage illness. I think most people would agree that society would not have been better should these people not exist.

Savulescu states we should select children with the best possibility for a good life. Although this author argues we do not know enough about genetics to make this decision, people exist today that think selecting against illness(es) will better the lives of their children. This belief shows deep ignorance on the effects that illness has on one's life and is deeply insulting to those that manage a disease. Having a disease does not increase overall suffering in the world. Rather than taking measures to stop people with illness from existing, the medical field should focus efforts on cures for diseases. Then, child x can exist without disease x.

We can only stop discrimination by educating those that do not understand how their beliefs are offensive or show an inequality between people. If you, or someone you know, lives with a disease, spread the word that the world is better because we exist!

Thursday, September 25, 2014

Find Autonomy through Depends


We all strive for this - the ability to choose what we do and when we do so.

I have always reasoned that I changed myself for myself, not for my Crohn's disease. Changing my diet to eating healthier and exercising everyday, I did that to feel better, not because my disease took control of my body. I chose to take the necessary steps to feel better and to live a more fulfilling life.

The past nine months have tested my ability to find happiness within a flare-up. From a summer of a liquid/soft diet to no longer running due to my constant need for a bathroom, Crohn's disease has tested my positivity, and definitely gotten the best of me at times. After 11 years of telling myself that my disease will never dictate my life, I am forced to buy depends.

Since my diagnosis I have always considered myself fortunate enough to rarely have an accident. I have found some interesting objects to use as a bathroom, but the point is that I usually save myself from the need of changing clothes.

This last month has taxed my patience with Crohn's. Weeks have passed since I have had bowel movements in the single digits throughout a day. My activities must involve nearby restrooms, just in case. I am too scared to run because the jostling will cause my bowels to become angry.

The decision to wear depends has been long and difficult. For whatever reason, I have continuously told myself that as long as I can make it to the bathroom, I have successfully kept autonomy even with a chronic illness.

Thinking about how I have lived this last month, I think that wearing them will help me regain control. Although I will still try my hardest to make it to the bathroom, I will no longer have restrictions to stay close to the bathroom. I will run again and have no fears about going for walks.

For many people managing Inflammatory Bowel Disease, having an accident can make the most significant negative impact on a person's life. Most people associate an uncontrolled bowel as someone who cannot truly live life. I am not proud of my need for depends, but I will not be ashamed that they will make my life easier.

The most important lesson I have taken from this decision concerns openness about your situation. I am fortunate enough to have a supportive boyfriend that will go with me to the store to buy my first set and has lifted me up through this difficult decision. My friends at school have helped me through the rough periods and provide constant encouragement. This is not something a person should keep to themselves to save face. No one should feel shame for using something that will make their disease more manageable.

Monday, March 24, 2014

Humans of Mayo Clinic

My school has started a "Humans of..." and it's been really cool to learn about what people are thinking and how those experiences affect their lives.
For anyone that knows me, they know that I love talking to strangers and learning about their lives, ambitions, etc. My favorite place to talk to people is Mayo Clinic because you never know where the people are going to be from and usually they have very powerful stories. I usually try to share those stories, but it doesn't always happen. I think it's important for people to realize just how strong we can truly be.

A couple months ago I saw a woman in the waiting room - she was painfully thin and had an IV line placed in her arm for easy access. I sat next to her and asked why she came to Mayo. She said that she came to live. Back home, she was told that she had two months left to live. They had taken out so much of her intestines that they couldn't remove anymore. She weighed less than 100 pounds and the medicine wasn't working. For the last few months she had been taking nutrients intravenously because she could no longer eat. Mayo was her last hope, but it had to work - back home she had a daughter that was counting on her and she was going to keep fighting until she was strong enough to be everything that her daughter needed her to be.
Talking to this woman was inspirational. While she was telling me that she didn't know how much longer to live, I saw a fierce desire to not only survive, but to come out stronger. She wanted health not only for her, but for her family. No matter what the cost was for her, she would do whatever it took to make life easier for her daughter.

This last week I sat behind a family. They started talking about his colonoscopy that was happening the next day and how that would affect what happened next. I excused myself for eavesdropping and asked if he was possibly going to be diagnosed with IBD. Turns out - he actually was diagnosed with Colitis 20 years ago without a flare-up until last year. Then things got real bad really quickly and he had his colon removed. He was having chronic pouchitis and they were looking at possibly doing a permanent ostomy. We talked for a bit and I told them about the Great Bowel Movement and then about camp when the wife said her niece has Crohn's disease. They seemed really excited to be able to talk to others about IBD so I'm not sure if it's something they really talk about.
During this talk, his family was the most inspiring. Throughout my eavesdropping the wife and boy seemed to be very supportive of the man. They didn't make the visit into a huge deal, but were letting him lean on them as much as possible. So often, we focus on how difficult the disease can be on the patient and lose sight of how it can affect the family dynamics. Many times, patients' families are the unsung heroes. Them and friends. I don't know what I would do without my friends who sit with me and distract me when I'm having a hard day.

I'll try to share the stories of others more often - I don't always have time to chat with people, but I like to.

Thursday, February 27, 2014

The Chronic-ness of Disease

It's been way too long since I last posted; as such, you all get to hear about all of the fun musings I've had.

Lately, I have been struck by the chronic-ness of my disease (now you all understand the title of my post!). After 10.5 years, Crohn's should just be a part of my normal. Yet it continuously throws me out of balance.
Some of you may remember my excitement at the end of 2013. For the first, I achieved remission without surgery. I was exercising, eating well, and it seemed like nothing could stop me.
Then Crohn's left me with the reality check. My family and I were so excited about me going to Jamaica. For once, my disease wasn't dictating my life. We made these plans almost a year in advance and stuck to them. It was a great feeling knowing that I didn't have to give something up later on just because my Crohn's decided to be a little shit.
During Jamaica, Crohn's decided I was forgetting what it was like to be sick and I ended up taking way more vicodin in Jamaica than I had in the last 6 months. But that was nothing to what this first month home has been like. I'm starting to get used to pain again. I can ignore the stabbing pains and found out today that I can even give a pretty good speech when all I want to do is curl in a ball while the doctors push all the pain medications into an IV.
Crohn's is not a disease. It is a way of life.
For the last months of 2013, I forgot that. Crohn's was seeming like a disease I just happened to have, but not something that actually affected my life. Now, I'm needing to remember how to deal with having a chronic illness. I need to cancel plans because the pain is too great, I need to watch what I eat, I need to be careful when I exercise to not push myself too hard.

Time to get out of my pity party. Crohn's is going to be a part of my life forever and there will be better times. I need to just remind myself when times are tough that eventually they will be good again.