The Diagnosis. The Disease. The Denial. The Reality.

We all know people who have lived through an injury or recovered from surgery or dealt with an illness. Many of us have gone through this ourselves. Most of the time, even if it is lengthy, there is a process where you are working toward recovery. Eventually, one day, you will likely be pretty much back to where you started or in some cases, better off. Break a leg? It will take a few months but you should be hopping, running, and jumping just like new. Have your appendix out? A few weeks later the pain is gone and you’re back on track. Even something more serious, the plan is you are treated and recover and move on with your life. This is the goal, recovery and a healthy life.

However, for some people that is not the way it works. Do you know anyone with a chronic illness? Well, now you do. A few years ago I found out I was one of them. After having each of my children I experienced pain and swelling in my knees. The fluid on my knees was so bad that I was going twice per week to have them drained and was receiving regular cortisone (steroid) shots. I was on crutches and in a lot of pain. Then it just went away. After months of pain it was gone. When it happened again with my daughter I just assumed it was some weird postpartum thing and put it out of my mind.

A few years later while I was training for a 5k it came back – the aching knees, the excess fluid. But this time I also had pain in my elbows, hands, and jaw. After a series of tests and doctors looking for a sports related injury I was informed, quite nonchalantly by a doctor with zero bedside manner or empathy, that I had a “Lupus-like disease”. Wtf?? LUPUS. I knew people with Lupus and that sh*t is serious. I called my mom and cried like a baby while making arrangements to see a Rheumatologist that specializes in this disease.

After many more tests the results were in – I didn’t have Lupus. However, I did have an autoimmune disease. Exactly what it is, we are not sure because there are many and mine doesn’t fit all of the symptoms of any one. Other than Lupus autoimmune diseases include Multiple Sclerosis and Rheumatoid Arthritis.

What is an autoimmune disease? Basically, for some unknown reason, my body attacks itself, fighting off some phantom beast it thought was there but instead ends up doing harm to itself. And this disease causes swelling in my knees and other joints. The good news is that, unlike Lupus, the disease is not to-date affecting any of my major organs. The bad news is that they have no idea what causes it, whether it will ever get better or whether, one day, it will spread and affect other areas of my body.

There are ways to treat my auto-immune disease, to “manage” it or “control” the symptoms but there is no Recovery Plan. This sucker is here to stay. Now, once the “flares” (when one is symptomatic) are under control I have been told that it is possible that I may never experience another flare again. This is unlikely but possible. I was also told that these flares are unpredictable and, although there are some contributing factors such as stress and diet, it really is impossible to know when they might happen.

So, I went about my life. Once I felt better I started running again and, to be honest, I didn’t put much thought into it. I didn’t really think about the disease at all because it was gone and life went on. That is, until last week. I started to notice a “creakiness” in my knees, a little pain walking up the stairs and a puffiness in my joints. My elbows were aching and my hands tired easily and got stiff and sore from typing. I denied it for a few days but when my knees began to puff up like balloons I knew it was back. My body was betraying itself once again.

But what can I do? There is no “recovery” to work towards so I will continue to manage the symptoms and do the best I can to go on and hope that this flare is short and the pain isn’t too bad.