Before anything else leaves my lips, I would like to offer a big, magnificent congratulations to all the runners who participated in and finished the Boston Marathon yesterday. I also want to say thank you to all of hundreds of thousands of spectators who went out and showed their support for the runners and the city of Boston. There are a great many things that are wrong in this society, but one of the very best aspects of our country is our ability to rally around one another.
In the next few weeks, I want to delve back into a subject that is very near and dear to my heart: coping with chronic illness. As a reintroduction to the subject, I wanted to link back to a post that I wrote rather early on in my blogging career. Diagnosis. I am very interested to hear what new readers to Suzlyfe might have to contribute to the conversation. My longtime friends, please reconsider the content and let me know what you take away from it now, in light of current developments in you life.
Dealing with Diagnosis
Being able to put a name to what is wrong is both a blessing and a curse. On the one hand, not knowing allows for a margin of hope to continue to exist that it might just be nothing after all. The alternative, knowing, hand can b*tch slap us into reality, but the great aspect of having a name for what is likely wrong means that a course of action specific to that diagnosis can be developed to begin aggressive and pointed treatment.
In short, it’s like finding out whether or not your crush actually likes you–if he/she does, you can start to move things along. If he/she doesn’t you can come to terms with that fact and “cut bait” or, like many, ignore that and stubbornly continue trying to fit a square peg into a round hole. I am not saying that you should just give up in cases like this, you should always fight for what you want in life, but one should always have a healthy does of reality.
With the myriad of health issues that I can attach to my body, you better believe that I have quite a bit of experience with diagnosis. Undoubtedly, the diagnoses revolving around my Crohn’s and Clinical Depression/Anxiety have had the greatest impact on the course of my life and my mentality.
When I was first diagnosed with Crohn’s (the depression/anxiety shortly followed), I had endured a summer of discomfort, sickness, and disappointments. Finally, a month (to the day) after Sept 11, I got my diagnosis, and we began to treat my illness (another disclaimer: I am not intimating that all diagnoses are 100% correct). And yet my treatment did not mean that we instantly settled upon a way to “fix” me; it was another 6 months of illness, surgery, pain, missed opportunities, and, at one point, 30 pills a day, to arrive at the conclusion of Remicade. But having a name to put to this “elephant in
my body the room” meant that I could go about my life with a sort of comfort that comes with knowing that we had some direction.
So that takes care of my physically, but what course of treatment did I choose for my mentality?
First, I made the decision then and there, in the doctor’s office, that I would not be a victim. Making this choice a priority in my approach made all the difference. I will say that I might have been a bit too staunch in my anti-victim-ness, even to the point that I would not cry. I would not necessarily recommend the no cry approach in the black and white sense–I can tell you that catharsis and the ability to release emotion and pent up energy is one of the most mentally and emotionally beneficial psychological tactics one can utilize. Even though I maintained my “stiff upper lip,” I did start to journal some, I began yoga, I went to therapy, and most importantly, I went to the farm and saw my horses.
Find something to motivate you and help you look to the future. So many days, I struggled to get out of bed in the morning. In my house, the deal had always been that if you were too sick to go to school, you were too sick to take part in your afternoon activities. For me, PM=Barn and time with my mom. On the days that I struggled mentally or physically to get up (obviously, this only applies to days when I wasn’t running a fever, etc. If going to school would have made me sicker, the option was off the table), I would tell myself, If you can get up and go to school even for a half day, you can go to the barn and see Jerry, Brian, and Penny (my horses). This made a huge difference. You should have something for which to live. Some days, I couldn’t even ride, but that didn’t mean that I didn’t benefit from my Equine Therapy.
At times, I was simply a nerd that knew I couldn’t miss more school.
Some days, I did my best simply not to scare my mom. I am very, very protective of my family in many ways. I was more worried about my mom most days than I was of myself. Know that your diagnosis affects more than just you personally. Sometimes, I think that my mom suffered greater emotional distress than I did (and moms of the world, I know that you feel the same way). I dealt with the physical, but she dealt with the emotional. She worried about me constantly and also dealt with the brunt of my mood swings (from chemical and hormonal shifts within my body, reactions from pain, exhaustion, frustration, hunger, fear, the list goes on). I spent the most time with her, and while I know she would not have had it any other way, I could be rather difficult at times. I would get so tired of her concern (THANK GOD FOR IT), of being worried about, of being sick ALL THE GODDAM TIME. And I took it out on her. And, to be honest, I still do. But now she shares that responsibility with Alex. I can be tough to love, sometimes, but I (hope) that I can honestly say that I also love hard in return.
Request, and if needed, DEMAND the support of your family. Again, you are not alone in this life, and they need to know how to get on board with the fact that you/your body are NOT perfect. No, I do not mean let them point out all your flaws. What I mean is that they need to accept the fact that you might need help beyond “natural” or easy fixes. This can be very, very, VERY difficult for some people to understand and truly accept. Too often, I have met fellow Crohnies whose loved ones cannot fathom that they (the Crohnies) are afflicted with such an issue. Family can be more in denial than the patient. Even worse, the family members/loved ones will often REJECT the patient upon/following diagnosis because the patient is no longer perfect. This is absolutely unexceptable. When you are born with an affliction like Crohns, or PCOS, or Depression/Anxiety, etc, that comes to fruition later in life, you must remember that (and Gaga will back me up) you were born this way. They loved you before with it, you are still the same person. And you must remember that as well: you are still the same person. Don’t take liberties with your diagnosis. No, you cannot go and make out with everyone now, or EAT ALL THE COOKIES because your body will hurt no matter what you eat. This is not a free pass.
Although I could go on an on, I want to wrap up a little bit.
A few quick strategies for actively dealing with diagnosis, big or small:
- Develop a plan for mental and physical treatment. Pick a goal, and GO FOR IT. Continue to pursue your passions, but….
- Be smart about your limits. Limits should be tested but respected. Don’t throw in the towel at the first sign of struggle, but know that sometimes, your body ain’t playin’.
- Keep pursuing and start something new. I started yoga, and I did it RIGHT. I took a few private classes and learned how to properly execute poses. This has provided me with a solid foundation for the practice that I have repeatedly returned to.
- Remember that you are still YOU and life will not always “suck.” It might for a while, but you are MOVING FORWARD. Think of all of those “life is a marathon” metaphors: you are in a sh*tty (sometimes literally) mile, but you gotta push through that wall, eat some sport beans, and motor on. If you need a break, take a little walk but always with the intention to START RUNNING AGAIN (literally or figuratively).
- Support your support staff. Take the time to show your appreciation. If you are bedridden, a lovely invention called the internet allows for online shopping. Even just flowers, or ear plugs (to tune you out), will be welcomed and provide some much needed relief and comedy.
- Have a sense of humor. Find a way to laugh at yourself. I have Crohn’s. I was diagnosed AT THIRTEEN with a disease that revolves around feces, pus-filled sacs, rectal exams, colonoscopies, bleeding ulcers, hormone fluctuations, ooooooh I could go on. There is very little that is sacred about my body when I am in the doctor’s office. Collecting stool samples is..well..yeahhhhh. Find a way to laugh about it. Catharsis. If you have to wear granny panties, get HILARIOUS ones. I had a pair with a giant gold star that I wore for my first colonoscopy so that they would be sure to know their target. But still retain some mystery so that your loved ones don’t just think of that when they should be thinking about other things ;D
ABOVE ALL, LOVE YOURSELF AND BE THANKFUL FOR YOUR LIFE. It could ALWAYS be worse. Trust me.
Talk to me, Goose:
How has diagnosis affected your life? Do you wish that you had approached your diagnosis differently, or are you proud of how you reacted? Please share!
If you are the patient, how do you keep changes in perspective?
If you are willing to share, what are some funnies from treatment? Like getting a sponge bath from a parent at the age of 30, or teaching your partner to get comfortable with the fact that you are not responsible for things emanating from your body lol…
And please, please, please do not hesitate to reach out to me if you have questions or just want to talk about what is going on–Crohns, stress fracture, anxiety, ANYTHING. I would be happy to lend a completely objective ear.