It has been a couple of years since I have come up against the fact that there is something wrong with me, and I have no control over it. I guess that is a bit of a fatalistic view, because I absolutely can decide what I eat every day, whether I take my medicine, what time I go to bed, how much I exercise. But as far as those lifestyle factors getting rid of my illness, my doctor tells me it is “not expected.”
I go through varying stages of grief with this problem. At first I was very angry at my body for betraying me. One of my core values has always been good health. I love eating healthy food, exercising, growing food in my garden, and I even love having good mental and emotional health. I think I appreciate these things because good mental health does not always come easily for me. That is probably why I have placed so much value on healthy eating, exercise, and lifestyle habits. There are so many things I can do and have done to maintain good forms of health.
At my first appointment when I was diagnosed with my illness, my doctor told me that this was not my fault. Tears started streaming down my face. I have done so many things to preventatively maintain my health, and none of them worked. I am seropositive with rheumatoid arthritis, and no matter how much bone broth I brew, no matter how many walks or bike rides I take, and regardless of the sunshine I gather, I can’t change that fact. It’s not my fault.
When I was first diagnosed, I told quite a few people in my family. They started telling me stories of people who were diagnosed with RA, and then did X, Y, or Z, and it went away. I found these stories increasingly frustrating, because so far, I had not found A, B, C, X, Y, or Z to be effective. In fact, I even called my counselor, whom I love dearly, and who has helped me in so many ways, and she told me that she was diagnosed with it incorrectly, and that I should get a second opinion.
So why am I talking about the thing that pains me most in my life on my gratitude blog? I need to talk it out because there are some things I am grateful for in this journey, and here they are:
Acceptance. I thought I knew what acceptance was before I had to accept this part of my life. I was wrong. I now know what it is to deal with something I never thought I would have to deal with. I remember the darkest morning of my journey, when I couldn’t squeeze my shampoo into my hand without pretty excruciating pain. I had been trying so many different things. None of them were working. And the voice inside my head finally said, This is your new reality. I had to accept that my life has changed to one that includes this pain. I had to decide that I would keep getting out of bed every morning, and keep showering, even if sometimes I just felt like not doing that. I had to accept that life sometimes is what it is. And accepting it really helped.
Connection. One of the things that has come with my illness is that I have to lean on my partner Alex more. I have always been extremely independent. I don’t like to need other people. I don’t like to ask for help, and even when it is offered my natural inclination is to say, “No, thank you,” and struggle along myself. I would rather carry a large anvil across town to the piano park than call someone and ask to borrow their truck. I don’t know why I am this way, but it makes it hard for some of the people closest to me to feel connected. Oddly, I love it when people ask me for help. I guess it is because when I help other people, I feel connected to them. So I am grateful for my illness because it has forced me, in a way nothing else could, to rely heavily on my husband Alex. I couldn’t get by without him, and I can’t express my gratitude for the deepening of our connection enough.
Empathy. As someone who enjoyed pretty good health for much of my life up until the last few years, I used to be less patient than I should have with people who were going through health problems. It is ironic, because I have a whole pile of nurses in my family who are so loving and always caring for everyone they talk to – “Here, I have this Health Thing, and I want you to try it and see if it works.” I don’t know where the nursing went—I didn’t get it in my blood. I think I got a little bit of acid in my blood, so maybe that’s where the stupid arthritis came from. But I digress. Since experiencing times when I couldn’t get out of bed, and had to call people and cancel things that I was in charge of, I have grown in compassion for people who Just Can’t. It’s okay to not always be able to do everything. Captain Marvel is fiction. I am not her, and I don’t have to be. I don’t have to expect anyone else to be her either.
My Hands. If you google RA, there are some pretty scary pictures of what it does over time to joints, particularly the hands. Having those images in mind, every day when I use my hands or sometimes even just look at them, I’m deeply grateful for them. I’m grateful that I found my love of quilting earlier in life and have made so many, and still have many more years of quilting to look forward to with fully functional hands. Medicine will make this possible, and I guess that’s one more thing to be grateful for.
So, hi. My name is Jenny, and I have RA. I am grateful for all the things I have learned from having this illness.