A few weeks ago, I wrote a piece called The 8 Things a Millennial with Arthritis Wants You To Know. It received an incredible response and many people with other chronic illnesses shared it because some or all of the points applied to them. I have been so touched by the response, and decided to expand upon it. This is a follow up, but you do not need to read that post to understand this one.
If you have been following this blog or my social media, you already know that I have rheumatoid arthritis and fibromyalgia. You can read the whole story, but for the sake of this post I’ll just give you a brief overview. Pain started when I was ten, I had four surgeries from 2004-2009, I was diagnosed with arthritis when I was nineteen, I was diagnosed with fibromyalgia when I was twenty, and I’m now twenty-three.
I think that being in my fourteenth year of chronic pain gives me the authority to talk about life with it, and I hope that discussing this will provide some insight for others into what life can be like. Obviously I can’t read minds – Or can I? Hmm you’ll never know! – so I can’t speak as to what life is like for everyone. But I do hope that some will relate to this and that it helps someone without pain have a better understanding of those of us with it. After all, chronic pain affects more than one hundred million Americans. That’s nearly one third of the population.
There is so much more to life with chronic pain that the physical pain itself, but that seems to be the aspect talked about the most. Like every other human being out there, my life is complex, faceted, difficult, and incredible. When I break the parts of my life down, the part that stands out the most to other people is pain. It is definitely a huge part, but not for the obvious reasons. Pain infiltrates so many parts of life – such as energy levels, finances, emotions, and relationships – but it remains only a component of who I am and does not absorb my entire identity.
Life with pain is just plain exhausting in many ways. On the one hand, it takes more energy to do simple things when you’re in pain, and spoon theory, which is kind of famous among the chronic illness crowd, explains that better. Because of this decreased energy, I have to make difficult decisions about what I’m going to spend my energy on. Do I make dinner and clean up from it or do I shower? Do I go to church this morning or buy food this afternoon? I have two classes today, but I can only go to one of them, so which do I go to? These are actual decisions that I’ve had to make. And then there’s the energy I spend pretending to be okay. I have perfected the nod and smile while internally chanting to myself to act natural. It is exhausting smiling and acting like I’m not in excruciating pain, and many times all I can do is exist.
But don’t forget the financial aspect. Do you know how much it costs to have multiple medical appointments in a month and to have multiple prescriptions?
Think about this: if you have two specialist appointments a month at $30 each, four prescriptions a month at $15 each, twelve physical therapy appointments a year at $30 each, two ER trips a year at $100 each, then you’re spending an extra $2,000 a year. Oh – and those figures are low. And let’s not think about gas costs to go to all these appointments or any appointments that aren’t covered by your insurance or if you needed a procedure.
Maybe this figure seems like it doesn’t matter. But do you have an extra two grand for medical costs a year? I hope so because that’s still a low amount. And this is all with insurance. If you are able to work – remember how I’m not? Thank goodness I’m young enough to be on my dad’s insurance still – then the insurance comes out of my paycheck. When I worked, I had to have extra deductions made from my paycheck because I didn’t just need regular health insurance; I also needed disability insurance in case something happened and I had to leave work for a period of time.
Want to save money? Sorry. Want to invest money for your future? Too bad. Want to travel to visit family for the holidays? Not happening. Want to make ends meet? You might not be able to.
More than likely, you’ve probably heard that money problems can causes problems in relationships of any kind. So maybe this will cause strife in your life. Or maybe the pain will.
Without realizing it, someone might feel like all you two ever talk about is your health. Or the people close to you might feel the brunt of your health almost as much as you do. Or you wonder if the reason why you haven’t dated in a while is because you aren’t really able to go out to meet new people or you worry that someone won’t want to be with someone who needs a lot of help and is in a lot of pain. Maybe you feel despair because you don’t think that you’ll ever feel okay again or you feel isolated because there’s no one else around you who understands what you’re going through.
It can feel like pain has become your entire identity or you worry that other people feel that way about you. But it isn’t.
I am who I am despite all the pain – or maybe because of it. It has infiltrated so much of my life, but there’s more to me than that. Who am I without it? Who would I be if it hadn’t started so young?
I am a sister, a daughter, a friend. I am a writer, a teacher, a Mainer, a Red Sox fan. I am a lover of coffee, crime shows, and period dramas. And none of that is caused or directed by pain.
My parents raised me to change the world for the better and to work hard to reach my goals no matter what. I want to make a difference in the world, which is partially why I write essays and posts like this, but I would have done something similar anyway. It’s true that the pain has made me stronger, and maybe more stubborn and it definitely made me take no crap. But I was raised by two incredible people who have worked so hard and who make positive differences in the world everyday, and I know that I would have turned out similarly even if I wasn’t dealt this hand.
Just look at my sister. She is the kindest, most loving human being I have ever met. She drives me crazy, but she’s my little sister; it’s in the job description. She is going to be an occupational therapist and she works with Best Buddies and she is the best babysitter on the face of the planet. Maybe my health problems didn’t influence the occupational therapist decision, but I know that she would have gone into a similar field no matter what because of who she is and who our parents raised her to be.
Yes, thirteen and a half years with chronic pain has influenced who I am. But so did my parents and my extended family, and so did my love of books and reading, and so did being raised in New England. In fact, my Irish immigrant roots, my ancestors who came to Massachusetts in 1623, my dad who worked incredibly hard to get to where he is, my Vanderbilt education, my decision to consume everything Jane Austen ever wrote, my mom’s commitment to give back to the community, my Catholic beliefs and traditions … it all impacted me so much more than the pain ever did.
Kate Mitchell is a blogger, chronic illness patient, and advocate who helps people understand chronic illness and helps chronic illness patients live their best lives.
Sorry to hear about your experience! I deal with this on a small scale as I'm a chronic migraine sufferer. I rely heavily on medications and require different doctor's appointments, treatments and prescriptions on a regular basis. it's a huge part of my life and affects almost everything I do, so I get it! You seem to at least have a positive attitude. which helps. Stay well!
I have fibromyalgia and this post is everything. I can relate in so many ways about making choices and how I live well within my margins. I actually just had to make a really difficult career decision. Thank you so much for this!
Sorry to hear about this! Love your positive attitude 🙂
I can relate to this post a lot. Medical expenses have been adding up my way. I like that you included the spoon theory because I think that's something people really need to read up on if they don't already know about it. I'm constantly telling my mom "my spoons are low" or "I'm out of spoons!" I also think you did a great job putting more into words the whole phrase of "my illness does not define me."
Your attitude and outlook on things is so positive and that's amazing!