My diagnosis is quite rare - 1 in 100,000 to be exact, so I don't know anyone personally who also suffers from Osteochrondritis dissecans (OCD - not to be confused with the compulsion disorder). This disease affects the cartilage in my joints (presently both knees and an elbow), and has required 11 surgeries over the past 6 years just to keep me mobile. I am a member of a facebook "support" group (more on that later) who share my diagnosis, so I do frequent that site from time to time. Just a few days ago as a read a new post on the site I felt myself shaking my head and cringing. A 25 year old woman explained that she had recently been diagnosed with OCD in both knees. She was a marathon runner. She expressed her determination to "fight the disease" and continue to compete in marathons, despite her diagnosis and her Orthopedic surgeon's recommendations. The reason that I shook my head and cringed was because that was me. Ok...I wasn't a competitive marathon runner but I fought my diagnosis with determination for at least a solid year...and you know what? I did not do myself any favors.
I understand that my chronic disease is much different than most of the diseases that my friends are facing. OCD specifically affects my mobility. It is a visible disease in that people can see when I am suffering, unlike diseases like crohn's or diabetes where there are no overt signs to signal "Hey! I feel like shit today!" On the other hand, I think that anyone who has been diagnosed with a disease that seemingly has no cure will share similiar experiences and feelings. Although I'm still navigating life with a chronic illness, I have learned a lot over the past 6 years. Therefore, I've compiled a list of 5 things I wish someone would have told me when I was first diagnosed with a chronic disease:
1) You and your body are on the same team
Like the 25 year old woman on the online support group, I immediately went into fight mode when I received my diagnosis. I vividly recall sitting in my Ortho's office, listening (but not "hearing") his shpiel on life changes associated with OCD, and thinking "F#$% you. You have no idea who you are talking to. I will fight this. I will win." Each time I achieved something that I was told I should no longer do (i.e. jumping), I quietly kept score - Kirstie 1: Knee 0. I recall posting a surfing video of myself and captioning it, "Take that, knee!" I was quickly humbled when I stared at an MRI that indicated that my activities had resulted in significant cartilage damage. Eventually I came to the realization that keeping score implies that my knee and I are on different teams, which is ridiculous. My knee is part of my body and instead of fighting against it, I've learned to keep it happy. You know the saying, "The happier the knee, the happier you will be," No? Okay, I made that up, but you get the point. Follow your Doctor's recommendations, cheer on your body when it is performing well and pamper it when it is struggling. Stop fighting against it.
2) Find a balance between seeking knowledge and living life
With all knowledge available with the click of a mouse, it can be empowering to read, research, and seek out others who share your diagnosis. My online support group has provided me with many useful tips on medication, knee braces, as well as support when I am feeling low. On the other hand, spending your days studying your disease and interacting with others who share your diagnosis can throw you into a black hole of despair where you become consumed by your disease. If you find yourself searching for the "thing," that magical "thing" that will cure you, it is, unfortunately, likely not going to be found on some online support group. The fact is, people who are consistently posting on your support forum are typically the people who are not doing so well. Think about it, if you are feeling pretty good and positive about your health, you are not spending your days posting on support forums. Therefore, the information that you are getting from your support group can be negative and bleak. Trust me, I've been that person who is laying listless and depressed on the couch and posting daily - misery loves company. If you find yourself perusing the internet for hours, and feel increasingly hopeless, it's time to get off the computer and get outside of your disease for a few hours.
3) You will experience the grief cycle MANY times and it's Ok.
Grief is a natural reaction to receiving a diagnosis of a chronic disease. You are essentially grieving your old self. Your life will change. You will never be the same. It's freaking sad. You will experience denial ("Not me. I will fight this!"), anger ("Why is this happening to me? I've always taken care of my body. This is not fair!), depression ("I can't face the world today"), bargaining ("If I could just run again I swear that I will be a better person"), and acceptance ("I can't run anymore, but I can swim"). I would also add a new and exciting stage to this cycle: Fear/Uncertainty ("Sure my disease is dormant today, but what's going to happen tomorrow?").
I would estimate that since my diagnosis 6 years ago, I have cycled through anger, depression, fear, and acceptance at least 300 times! What's shocking is that I often don't recognize this and am suddenly dismayed that I feel an intense emotion! Just last week as I was recovering from surgery #11 I was out at a social event with my friends, my knee gave out, and I fell on a table. Initially I was mortified, but that was quickly followed by intense anger. Once I returned home, I threw my purse against the wall and screamed. And then I cried. For about 60 minutes I felt betrayed by my body, I felt sad that I have this stupid disease, and eventually I came to the conclusion that my knee is still recovering, it wasn't a super huge deal, and my friends don't think any less of me. A few years ago that incident would have preoccupied my thoughts for days. I will say that now that I am able to identify why I'm feeling a particular emotion, and allow myself to feel that way, I am able to move through the grief cycle much faster.
4) Help your friends help you
I think that it's really important to educate your friends and family about your disease. Don't beat them over the head with it, but provide them with the basic knowledge and how this disease is affecting you so that they can help. I spent a good few years telling everyone that I was "fine." Like a robot, I generated key phrases like, "Coming along," "Feeling fine," or "Getting there." This was sufficient information for acquaintances, but my friends and family became frustrated by the distance that I was creating between us with my nondescript response. I didn't realize that my friends felt powerless too! They, too, were mourning the loss of their old vibrant and healthy buddy. I eventually divulged that I felt sad, hopeless, and depressed. I'm not going to lie - some friends responded with radio silence. Those peeps were surface friends, and I soon realized that they were my "feel good" friends - those buds with whom you party, but not necessarily the friends who you count on. My close buds, on the other hand, responded with an outpouring of support. Although I struggled to answer the age-old question, "What can I do to help?" (I honestly didn't know!), my friends stepped up by simply being there - sending me a funny text, stopping by with a tea, and making me laugh (there were times when I thought that I would never laugh again!). Let your friends help you.
Although it's important to educate your friends and family, don't assume that they are always aware or conscious of your disease. I remember feeling pissed off when my buds chose a venue with stairs for a social event. "Why wouldn't they realize that these stairs are going to be difficult for me? How selfish!" The fact is, your friends aren't thinking about your disease/disability every second of the day because they don't see you as your disease. And that, my friends, is a good thing!
Disclaimer: If you are feeling depressed to the point where you are thinking about harming yourself and/or you can't see a way out of the black hole, please seek professional help. I worked with a pain psychologist who was instrumental in arming me with the strategies that I needed to keep my head above water during challenging times.
5) Life does, in fact, go on
Ahhh...easier said than done. There were so many times where I really didn't believe that life would go on. I likened myself to my little white dog, sitting at the window and watching the world pass by without me. It's been 6 years since my diagnosis and realizing that life does go on has been the most difficult concept for me to grasp, and there are still days where I feel just the opposite. And you know what? - sometimes we are just not ready to hear that life will go on, and that's fine too. But looking back at the past 6 years I can see that this sucky disease has actually opened up opportunities for me - I was forced to adapt and make changes, changes that have opened up my eyes to a whole new world. For example, the cold weather in Canada was wreaking havoc on my joints, and that was the push I needed to pursue a life in a warmer climate. And here I am - loving life in Grand Cayman! In addition, although receiving this diagnosis initially challenged our marriage, I know that my husband and I are much stronger as a couple having navigated this disease together. We are a better team because of my OCD. Your disease might prevent you from continuing with your job or partaking in physical activities that you love. You are allowed to grieve that, but also see it as an opportunity to try something different. Often people become stagnant, locked into the lifestyle they believe they are supposed to live and are scared to veer in a different direction. Sometimes a diagnosis creates the push that you need to make those changes and, essentially, live a happier life.