I remember the very moment I noticed. It was March 31, 2018, days before my 38th birthday, I was on vacation in the Philippines, out with a group of people I met there, and I looked down at my left hand and noticed two of my knuckles were slightly misshapen.
Four years later, I have full-blown, painful arthritis in all of my fingers. It didn’t begin there. I’ve had back pain since my teens and confirmed advanced osteoarthritis and degenerative disc disease in my spine by my early 30s. The diagnosis For my 42nd birthday, my feet decided to join the arthritis party.
I also have fibromyalgia, a little-understood chronic illness with symptoms spanning from cognitive to mental health to physical, which include chronic pain.
I am in pain every day, and I will be for the rest of my life. I want to tell you what that means.
- I’m not trying to be high maintenance. I may ask you to help me with something that seems simple or reasonable for most people to do, such as lifting something moderately heavy. Even if my arms are strong, my back may not be able to handle the weight or I might be afraid I could move the wrong way and be unable to walk for days or weeks. I may ask to sit in a certain chair in your home, request a pillow, choose to sit on the floor, or not sit at all. I may not eat certain foods that will increase my inflammation. I’m not trying to be needy, difficult, seeking attention, or being a blatant weirdo. I’m trying to manage my pain.
- I’m not impatient; I’m in pain. I serve on several boards and I get frustrated at meetings going long, especially due to unproductive venting, and it’s not because I’m bored, disagree, or don’t genuinely care. It’s because every minute I sit in that chair, I’m in pain, often intense pain.
- I’m not rude; I’m in pain. I might show up at the last minute and be the first to leave the dinner table. Again, it’s not because I don’t want to be there. It’s because the social situation involves sitting in a chair, which is painful. I have a sitting disability.
- My pain isn’t just about the pain. If I stop doing something because of pain, it’s not necessarily about whether or not I’m experiencing the feeling of pain. It’s about what the pain is telling me: that I’m causing damage to my body. I need to not cause damage to this vessel I need to use for the rest of my mortal life.
- I’m not trying to blow you off; I’m just worried about my pain. I may decline invitations or cancel plans because I worry about an activity causing me pain (and damage). I also worry about my pain making me unpleasant company or preventing spontaneity that everyone else in a group would enjoy.
- I need information. If we do make plans, please tell me as much as you can about where we’re going, how long we’ll be there, and what it’ll be like. Check out this article I wrote about exactly what information to provide: Advance Information Checklist for People with Disabilities and Their Allies.
- I’m not unprofessional; I’m managing my pain. I might wear sneakers at one of my professional speaking engagements or flip-flops to a board meeting to prevent increased pain in my feet. I might be lying down or curled up in a casual position during a business call to prevent increased pain and damage.
- My standards of clean are higher than it looks. I do my best to keep my house “good enough” as far as cleanliness and lawn care, but I do wish it were perfect. I love clean spaces. It’s just extremely painful for me to use my hands longer than several minutes at a time, which makes it very difficult to keep up with my house.
- My pain makes me sad sometimes. Being in constant pain is depressing. Physically coping with the pain drains resources for emotional strength and makes me more susceptible to sadness. Also, there are so many losses that I grieve. That I can’t ever run another 5K. That I’ll never manage a backwoods camping trip. That I can’t wear my favorite boots all day long anymore. The invitations I decline. The limitations on my independence. The limitations on what I can do to earn a living. That I’ll never have a pain-free day for the rest of my life….
- I don’t want you to fix it. I know you care and don’t want me to be in pain, but please keep your “solutions” to yourself. I bet I’ve already heard it, probably tried it, and besides, I can’t be fixed without a scalpel at this point. If I share about my pain, please just listen and not rattle off the first solution that comes to mind, and if there is something you can do, don’t worry, I’ll ask.
- I’m afraid for my future. With a degenerating condition that’s already so advanced at age 42, I’m terrified of what my future will be, all the limitations, necessary surgeries, being fully disabled and dependent … though I have no spouse or children to help me. I try not to think about it but to instead just mind it behind the scenes by staying as healthy as I can, making good choices, and asking for help to prevent injury. Sometimes, though, the picture of a doomed future is too big to ignore and I’m so scared.
- It’s not fair. Right, right, life’s not fair, but that doesn’t make it OK. There’s only a certain level of acceptance I’ll ever reach. I’ll still be aware of what I’ve lost. I’ll always know that it’s not “OK” to hurt all the time, and at my worse moments, I may resent those who live without pain … and seem to take it for granted. Some of the extra work I have to do is catch myself in these moments and not take it out on you.
- It’s not going away. Who I am now, and how I have to live, is who I’ll always be. My pain isn’t something for you to get past or overlook. I need you to accept it and live with it like I do.
- I am valuable. I am a whole person, and my pain is a part of that. I’m not “broken.” I’m not “less than.” I still have everything to give to the world and I give it with my whole heart.
- I am happy. While I may be sad sometimes, and I get frustrated and experience a multitude of unpleasant emotions due to my pain, overall, I am a happy person. Like I said, pain is just one part of me and my life. I also love adventure and dogs. I am creative. I have a great sense of humor. And I have as much right to joy, and truly as much access to joy as anyone else. Sometimes joy takes work, but mostly it’s a choice. I can’t choose whether or not I’ll be in pain for the rest of my life, but I can choose either to be unhappy forever because of my pain, or to be happy because of all the countless reasons I have to be so.