The moment you are diagnosed with an incurable disease, your life turns upside down.
You see the world through a new set of lenses. You find that the relationships you had pre-diagnosis take a very different shape than they did before. Some are better and some are worse. There are many reasons for the change in our relationships with others, but sometimes it is our own expectations of how each person should respond to our new needs that changes the direction of our relationships.
Before learning that rheumatoid arthritis and I would now have a lifetime affair, I rarely saw the doctor.
I had a primary care physician, but it was years in between visits. Once I saw my rheumatologist for the first time, we were already pretty sure that I had rheumatoid arthritis and with a four month wait to see him, I had had plenty of time to read up on the disease. From my readings, I created a perfect doctor who would gently answer all my questions, help me through my meltdowns, suggest life-changes, and send me to physical therapy. My rheumatologist did none of those things. He informed me in a very monotone voice about what to expect from my disease and the options, as tears rolled down my face. Right off the bat he failed the expectations I placed on him for a successful relationship and I became rebellious. I referred to him my “drug dealer” because in my opinion he had let me down in every other way.
The relationship expectations I had for others in my life were also often disappointing.
My husband it turns out is not the person I can turn to for a good cry. I couldn’t protect my children from seeing me in my worst hours, which meant I wasn’t always the mom I wanted to be. Friends that I thought I could count on for emotional support had no idea what was really going on with me and I often felt lonely. I feared sharing my chronic illness with my co-workers thinking they would find me weak and unable to do my job efficiently. All these relationships were a disappointment because they were not turning out the way I had imagined them in my head.
What changed? I finally got to a point in my illness that it wasn’t all about me. Once I had seen the ups and downs of rheumatoid arthritis long enough, I was able to look outside my needs and really see the people in my life for the first time since my diagnosis. First step was to get a new rheumatologist. He really wasn’t a good fit for me. When I found a new rheumatologist, I went without expectations and rebellion. I needed help. Amazingly, things went better than expected. She doesn’t fulfill every need I have, but I have also learned that having a team of healthcare providers helps to meet my needs and expecting one person alone to do it is crazy. When I opened my eyes, I was able to openly talk with my husband and to see that my pain hurt him deeper than I knew and when I cried on his shoulder that fear grew. Instead, he needed us to move on and with time, I appreciated that because it made me feel normal. You can’t protect your children from seeing your pain and as they grew older I realized it would have been a mistake to do so. My son became my protector. He is the one that lets me cry on his shoulder and who makes sure I am physically okay. He is my calm. Allowing me to cry on his shoulder is never the relationship I wanted with him, but it fits his personality so well. My daughter has always been my encourager and that trait has made her the friend she is to others today. While I didn’t want to share my illness with co-workers, the conversation can’t be avoided when you are limping around campus. I have found that some co-workers need to be avoided because I feel uncomfortable with their reactions but that others see me as strong rather than weak. And friendships. Each one has been a little different than I imagined. Some friendships ended because as I opened my eyes I realized they had more going on in their own lives than I was able to notice before and I didn’t have the energy to deal with their issues and mine. But along the way I have met so many other wonderful friends that fit better with the life I lead today.
My relationships have changed in the last 13 years. Age and rheumatoid arthritis have both given me a chance to choose my relationships with more thought.
I know that I no longer have the physical or mental energy to allow high need people into my life that aren’t immediate family. I have learned that I have a responsibility in each relationship of not putting too many expectations on them about how they should respond to the ups and downs of my life and hope they do the same for me. Most importantly, as my relationship with rheumatoid arthritis has grown and is better controlled, I am able to see that each and every person I meet, illness or not, has baggage they are carrying around. The way they react to me in my relationships with them comes from their past experiences, their fears, their lack of knowledge, and their own needs. When I am truly able to leave my relationship expectations at the door, I have a better chance of our relationship working out in whatever shape and form it is intended to take. We can’t all be everything to everyone.