"I'm a pain in the ass, I think"by Mandy Crest Patient Expert
"I've had such a hard time acknowledging I even have a disease. I'm a pain in the ass I think. I think of you all the time. You have 100x the issues and you seemed to have so much more grace and patience."
That statement is an excerpt from the email of a very dear old friend. She shared some of the happiest times of my life, and supported me during the very worst time of my life. We've drifted apart since I moved hundreds of miles away, but the bond of friendship is a strong one, no matter how infrequently we speak.
When I read those words, my eyes welled up with tears, for so many reasons. She's a strong woman. I don't think she realizes this, but she has long been an inspiration in my life. She was recently diagnosed with fibromyalgia. I can't bear for her to think that I am the strong one and she is not. If I do have a certain grace about my MS, it hasn't always been so.
My Dear Friend,
Miles already separated us when I received the diagnosis of multiple sclerosis. We emailed back and forth a few times, and on a visit there, you saw me using a cane, but you didn't get to witness the process of acceptance. You didn't see me during my dazed and confused state.
I didn't publicly acknowledge my MS in the beginning. Aside from the people who already knew of my quest for a diagnosis, I could not say the words, "I have MS" when people inquired about my health. It took time.
Although nobody told me so, I was probably a big pain in the ass, too. The constant emergence of new symptoms and powerful emotions forced me into a self-centered state for a while. It's only natural. The trick is not to stay there.
I can't confirm that I have 100 times the issues you have. We haven't shared many details of our physical challenges, or the drastic changes we have had to make in our lives. I suspect 100 times is stretching it. From what I understand, fibromyalgia is no walk in the park.
I haven't always had grace and patience; it emerged slowly over several years. These days, that's the image I present to people because I've made peace with the enemy. MS is not going to go away, so I learned how to live with it, around it, and through it. Not because I'm such a great person, but because I simply don't have another choice.
You've got a lot on your plate right now, so cut yourself some slack. It's okay to be a pain in the ass for a while.
And keep this in mind... through someone else's eyes, you may appear to be the very picture of grace and patience.