When I was pregnant with our daughter I had a picture-perfect pregnancy. I exercised pretty much every day and lived an active lifestyle, just as I was accustomed to prior to the pregnancy. After my daughter arrived, I worked for a hospice organization with my LCSW (licensed clinical social worker) license. I was able to do my home visits and work in the evenings and was fortunate enough to stay at home with my daughter during the day. For a while there, it seemed that I had the best of both worlds.
When my daughter was about five months old I started having odd, indiscriminate pains in my knees, my lower back and my wrists. One day I would have horrible pain. The next, I would feel completely fine. My husband and I just attributed it to our baby getting bigger, lugging around a baby carrier and overextending ourselves. That's life with a baby, right? But as time went by the pain grew worse and was showing up in places it had never appeared before. I would say it became more systemic. The pain grew more intense, and lasted longer. The days of feeling fine were becoming few and far between.
Finally, after a few months of cycling pain, there was a night when the pain kept me from sleeping. I tossed and turned all night long, trying to find a position that was comfortable. I was exhausted but still could not manage to sleep. My husband, who is a doctor, woke up in the morning, looked at me and knew something was not right. I just burst into tears and told him I had no idea what's going on but I knew there's something very, very wrong with me. I felt like somebody had taken a sledgehammer to my entire body.
He asked me specific questions and when I told him about the severe pain in my joints I saw the color drain from his face. He said, "Listen, it sounds like you have RA and we've got to get you in for some labs today.”
A few weeks later, when our baby was still less than a year old, a rheumatologist confirmed our suspicions.
When I was first diagnosed all I wanted was to feel better. I was emotionally blunted but willing to try anything to get better. At that time, I don’t think I realized the impact that this diagnosis would have on my life, the adjustments that would be in store. To this point in my life, I was the picture of health; I took no medications and a multivitamin was my point of reference for “daily medications”. I remember saying to my doctor, “if you tell me that hanging upside down by my toenails while sleeping will help me, I'll do it!" All I wanted was to feel healthy again.
On top of the pain there was the extreme exhaustion—a type of exhaustion that is indescribable. I felt like everything I did I was trying to do neck-deep in quicksand. It took all of my energy to give my daughter a bath. So when I was first diagnosed, the grief process didn't trigger for quite some time because I was physically feeling so awful. At first, I approached this condition like I approached everything in life—deciding how to overcome and get past this obstacle. I did not realize that this would be a lifelong journey that would alter every aspect of my life. It is amazing the things that one takes for granted, until it is no longer there.
It might sound like basic advice, but experience tells me that it works: try to acknowledge that some days are going to be easier than others, and some days are going to be really, really hard. Give yourself permission to say, "I am not having a good day." For me, this is something that has been especially difficult, as we live far from family. Even on bad days, taking care of my daughter is a priority.
Look for ways to focus on what you can control. We can't control this disease or wish it away. Unfortunately, like some medical conditions, we can't "behavior" it away, either. Sure, we can do things to minimize the impact, but ultimately it will be a disease that will be with us forever.
But we can control how we choose to respond to it. Recognize your limitations, and remember to approach every task with the attitude, "Okay, if you can't do it this way, try to find another way.”" The “right” way is the one that works for you. This is something that can be applied even to daily tasks. Giving yourself the permission to find new ways of accomplishing tasks will be helpful. Stay involved in what your passionate about, and don't let limitations define you.
The illness is not who we are. Focus on what you can contribute, rather than dwelling on what this illness takes from you. One thing I really struggled with early on was going to bed feeling fine, and waking up feeling like I had been run over by a truck. For someone like me, who likes having control over situations, that sort of uncertainty was hard to handle at first. I learned to focus on what I can control rather than worrying about what the morning might bring for me.
Finally, stay open to the idea that major life changes aren't necessarily bad things. I never envisioned a telecommuting career for myself, especially with a Master’s Degree in Social Work. But after my diagnosis I realized that telecommuting was the most feasible option for me to continue with a long-term career. Today I supervise a team of 16 personal health coaches and I also teach for an online MSW program. If people are open to the sort of adjustment that this illness often demands, things can definitely end up working out all right in the long run. Flexibility and perspective are key in continuing with a positive outlook. I try to always approach situations with a “glass half full” perspective.