Being diagnosed with a chronic or life-threatening illness is all about transition. It entails shattered assumptions about what you believed your life was supposed to be moving forward. It entails a shift in thinking, not to a bad place, but to a new place. Making the shift may take some time, but anything worth having is worth putting in a little elbow grease and dealing with the learning curve.
I was diagnosed with an auto-immune disease as a kid so I’ve always known that there was something different about me physically than others. However, what I wasn’t prepared for was a secondary diagnosis about seven years later. I was part of a campus organization that raised money for kids charities. One of the events we held was a 24 hour dance marathon. I was participating in the dance marathon and noticed that as the marathon progressed my feet were in more and more pain. It wasn’t the type of pain that comes with your shoes being too tight, or just from being on them a long time. It was a sharp and focused pain. I finished the marathon and took to bed for a couple of days thinking it would resolve itself; it did not resolve itself.
This began my consultation with doctors and each doctor would give me a different explanation. I remember the day that rheumatologist said that I was one of 3% of psoriasis patients that get something called “psoriatic arthritis”. I went on a course of anti-inflamatory medication and it helped, but I still woke up every morning with pain. In addition to the pain, I was also taking a new set of medications and had to watch for the side-effects that accompanied the new medications. It was a shift for me because I now had more than one health challenge to keep tabs on and they were impacted by each other.
There was a day of surrender when I said to myself that “This is my life…now”. I would always be at risk of being incapacitated by pain and the possibility of being unable to walk. I would always have a new specialist in my life. I would always be walking the tightrope balancing the triggers of both diagnoses. If I took it as a bad thing I’d be giving myself the license to be miserable forever. Understanding that “This is my life…now” was freeing. It allowed me to explore new treatments both traditional and complementary. Once I embraced the statement, “This is my life…now” I felt more in control of my life and my illness.
How will you make this statement part of your life? What steps do you need to take to embrace this paradigm shift?
Tuesday evening I had the honor and pleasure of speaking to the local psoriasis support group. The topic was “How to be the CEO of your Healthcare Team”. It was a great evening. The group was welcoming and the mix of attendees was diverse. The group not only had those who have psoriasis but a Physician’s Assistant (PA), Sarah Kurts, who not only specializes in treating patients with psoriasis, but volunteers her time to co-facilitate the support group, and representatives from the pharmaceutical companies that serve the psoriasis community.
The magic came at the end of the evening when a few of us hung out to continue the discussion about healthcare, insurance companies, treatment protocols and ideas about the underlying factors that contribute to psoriasis. While we were standing there we got to throw out a bunch of ideas that would be great for scientists to study. That is the most important point, those of us who have an illness know the illness from not only the personal, emotional and spiritual aspects of having an illness, but the physical aspects of the disease. We know what sparks a flare. We know what causes trauma to the skin. We know, from lots of trial and error, how the environment impacts our health. This is incredibly valuable information that scientists need to know.
This type of impromptu think tank is what motivates people to become the CEO of their own healthcare. It’s the inner force that says to the world, “I have something to say and you need to hear it”. It’s incredibly empowering to have these insights and often is the driving force for those of us facing a chronic or life-threatening illness to voice our opinions to our health providers and those who represent us in the nonprofit arena. Every piece of information we can add to the mix increases the chances of coming up with a winning strategy to overcome illness.
Having these types of discussions is why support groups are so important. Support groups are the incubation arenas for new thoughts and ideas. They are the springboard for action. Groups or organizations that provide education and support are a gift that I feel not enough patients take advantage of as they deal with their illness. Knowledge is power and having people like the pharma reps at the meeting added another dimension to the discussion because they have the ear of the researchers. This is where the domino theory comes takes hold, you get a group of people together who begin a discussion and the first domino gets knocked down creating a chain reaction. I’ve talked to at least three people about some of the ideas we discussed in our mini think tank. I’ll take these ideas to my next meeting with my doctor and hopefully that knocks down another domino.
What will you do to create an environment that instigates new ideas and a call to action?
I’m out and about a lot. I interact with people all the time and I’m sensitive to what I see out in the world. I see the looks and stares people make to those in wheel chairs. I observe the faces of those who see someone who has suffered a burn. I take note of those who pass a woman wearing a knit cap to keep her bald head warm. We’re a culture that is caught up in how people look. I’m not sure if it’s the difference that makes the gawk or the fear in their own hearts about what if this were them.
I can tell you that “the body is the body”. There is nothing to fear except fear itself (I believe someone famous said that). Unless someone has something contagious there is no need to fear another who due to illness or accident have an altered body. I’ll tell you a quick story and then I’ll play the other side of the fence for a moment.
Many years ago I was in graduate school and the first day of class walked in a guy who had obviously been in a fire. His face and hands were quite altered. Like everyone else I did a double take. It wasn’t out of horror or disgust, but probably pity. I felt bad that this individual had to live his life with the prejudices of our culture of beauty. Talking to him over the first couple of weeks of class I had an amazing realization, he didn’t pity himself. In fact, he was grateful for being alive. He shared his story and explained his road to recovery. His goal was to work with burn victims to give them hope that beauty is truly more than skin deep.
When we meet someone who has an altered physical appearance, what is our fear? The first fear is what if that happened to us? The other is, can I get past the physical and what will it take to get me there? I was at a conference hosted by the National Psoriasis Foundation. Dr. Brian Sperber talked about the history of psoriasis and how those with the disease were treated in ancient times. He shared that many with psoriasis were thought to have leprosy and banished to colonies never to be heard from again. Others with psoriasis were thought to have these lesions as a sign of the devil or of being a witch and were burned at the stake.
Obviously we don’t continue those practices today…at least not literally. The question is how do we interact or treat people whose bodies have changed? What misunderstandings do you have about someone you’ve seen in the store and without knowing made a judgment.
It’s courageous for those facing body image issues due to illness or injury to walk proudly in this world. Trust me, they know people are staring, but courage will trump fear. If your body hasn’t been impacted by illness or injury be conscious of your good fortune. If you are facing those challenges, change will only occur as long as you’re comfortable in your own skin (figuratively and literally). When the body issues rise to the surface, get some support from someone who understands. As someone with severe psoriasis I’ve had people afraid of contagion, afraid to touch me or turn their heads when I caught them staring. It can be a long hard road, but once you achieve a level of comfort you’ll stop radiating the vibe of fear and get on with you life.