Taking a risk with a chronic condition can be a frightening idea. Better the devil you know than the one you don’t. But maybe your condition means you can’t walk the dog anymore. Maybe exercise and gardening are now beyond your ability. Things like making your bed or dressing yourself might be a challenge and you may even be too tired to play with your children. A diagnosis of a progressive and chronic health condition will impact your ability to earn a living. It will definitely increase your medical expenses. It can affect relationships and can cause depression and anxiety. No part of life is left untouched by the diagnosis of a chronic condition.
What are the Options?
What if your chronic condition means that you have lost those very things that make your life worth living? Even if you do everything your doctors tell you, take all the medications offered and follow the standard of care for your condition, what if you remain unsatisfied with your quality of life? You might get fed up and start looking for alternative therapies that make more sense to you. You might even think about taking a calculated risk with a chronic condition. I did. It worked for me and this approach might work for you too.
The Educated Patient
I am an educated patient and want to manage my own health as much as possible. Because I don’t like the standard of care for someone with my condition, I decided to challenge it. I got educated, gathered up my courage and challenged my healthcare team. I’m willing to fight for the quality of life I want as I define it. If you want a better health outcome than your healthcare team can offer, you need to become your own best advocate. You need to bring your real life experience into the discussion. Being sick is hard work. Taking responsibility for your health is hard work. Choose your hard, get educated and get in the fight. If you want to take a risk with a chronic condition, then I have a story to tell.
The only thing you absolutely must know is the location of the library.Albert Einstein
The Standard of Care
I have a very rare mitochondrial disease called MERRF. My first child died from complications of this disease in 1997. Her death was very well studied. That’s when our family first heard about MERRF. Until then, I was perfectly healthy. I was a good weight, active, and energetic. My pregnancy was easy and uneventful. My entire family got tested after Emily’s death and discovered we all carry the defect to some degree. It looks different in each of us.
For me, it showed up as a collection of large fatty masses that developed around my neck and upper back. The diagnosis was Multiple Symmetric Lipomatosis or MSL, an even more rare presentation of the disease. These masses began growing very quickly once I entered menopause and began to interfere with my sleeping and breathing. Debulking surgery is the standard of care for MSL. Repeated surgery is likely as the lipomas will almost certainly grow back. Being a reasonable patient, I tried to follow the standard of care recommended to me by my medical team, and so agreed to the intervention.
It’s Not Working and I Need another Plan
In October, 2016, I underwent surgery to remove a 3 kg mass of fat from my upper back and shortly after, had a metabolic crisis. There were challenges in walking, with extreme fatigue, and I could not even make my bed in the morning. Ordering groceries online was exhausting, but at least I could do it in my pajamas. I had no energy to wash my hair or make a cup of tea. Nothing in my body seemed to work well and I ended up on long term disability. I then received another diagnosis of a mental health adjustment disorder and mixed depression and anxiety. Insult to injury. Even though I was following the standard of care, it wasn’t working for me and I realized I needed another plan.
My team told me I had a permanent and progressive disability with no prospect for a return to work. The best medical advice said there was no cure or therapy and because the disease was so rare, nobody could predict its path. Six months later, I was diagnosed with pre-diabetes. My remaining lipomas continued to grow at an alarming rate and the recommended therapy was more surgery, which I knew I could not tolerate. Additional insult to injury. What more did I have to lose? If I did nothing, I would continue my drift into diabetes and metabolic syndrome. I had no ability to exercise so could not manage my increasing weight. I could not see how I could get better by doing nothing at all. Taking a risk with a chronic condition seemed like a reasonable option to me in this context.
Difficulties strengthen the mind as labour does the Body. Seneca
I started asking questions and risked awkward conversations with my medical team. Respectful and appreciative, absolutely, but I was also very, very persistent. I started educating myself to my disease. With learning and research, my self confidence grew. I audited two university courses to help discipline my research. Realizing that I needed something different and willing to try something different, I had to become the change I needed.
Seven months after surgery, I had a strategy to recover my health. It did not involve medication or surgery and was outside the standard of care for someone with my condition. In some respects, the lack of acceptable options for someone with my condition made my argument with the team easier. I applied my plan to myself over time and documented all my interventions. I collected data across five measures over two years. Maintaining close communication with my medical team throughout was a critical part of the success of my interventions. The team might not agree with it, but at least they knew about what I was doing if something went wrong.
My taking a risk with a chronic condition made my medical team very anxious. There is no doubt this created conflict in the relationship. We did not always see eye to eye on my approach to managing my health. Fortunately, as a professional family mediator, my conflict resolution skills came in handy.
I considered everything they told me as I respect the experience and learning that comes with the profession. I also looked to other resources and relied heavily on my own critical analysis, and yes, even intuition. Sometimes the team and I had to agree to disagree. Sometimes we agreed less agreeably. I persisted and documented and communicated with them throughout the period of study, even when we disagreed. The central conflict as I saw it was my assertion of autonomy as a patient and the very real risk that something could go very wrong. We all knew what the risk of doing nothing looked like for me. At the end of the day, with as much respect as possible, I asserted my autonomy as a patient. It’s my life and therefore my decision to take an educated risk.
For me, taking a risk with a chronic condition paid off. Challenging my relationship with my healthcare team to get a better health outcome was a smart gamble for me. They took a risk and were willing to change the way we worked together to allow this to happen. I’m not sure I would have risked it on my own. I depended on their advice on more than once occasion but from the perspective of a learned colleague. As a team we were very relieved when my test results started coming back with positive results.
Since then, my quality of life has improved dramatically, and I have returned to work full time without accommodation. I lost over 50 pounds, am no longer pre-diabetic, exercise about eight hours a week and enjoy a healthy body weight and normal activity levels. Most of all, I feel in control of my life again and I really, really, like that feeling.
My learning from this experience has been incredible. The development of this website is a way to share the learning. I am not selling anything except maybe an idea about how to better manage your health. MERRF and MLS were the doorways that brought me into the discussion, but I think anyone with a chronic condition can benefit from some, any, or all of these resources.
Please remember that my journey will not be yours. This is not a road map for your health recovery. Some of what I did may not make sense to you and for very good reason. Work with your medical team and use them as trusted guides on your own healthcare journey. They care about your health almost as much as you do.