An open letter…

Dear world,

I am a chronic pain patient. And a chronic cardiac patient. That’s not the only thing that defines me, of course. I’m a million other things as well!  But my physical condition does affect the rest of my life. So here is some things that I want you to know…

  1. Just because I am smiling does not mean that I am not also in pain. Likewise, just because I’m crying does not always mean that physical pain is the cause. I get happy and sad and all the other emotions out there, just like the rest of the world does.
  2. And speaking of emotions… there are some I get more often than I used to. I’d like to apologize to all my friends and other poor random strangers that I get tetchy –  grumpy – irritable – angry – depressed…. Pain hits me on so many different levels other than just “pain.” It’s humiliating and exhausting and isolating, and although I do my best not to take it out on the people closest to me, sometimes I don’t succeed. I try; it’s all any of us can do, and I beg for your forgiveness and understanding every day, just as I give thanks to all of my support team for being there every day.
  3. I am on a treatment plan that has been developed with countless teams of doctors. They are monitoring me. What we’re doing is what we think is the best for me — whatever that entails. While I appreciate that your attempts to propose alternative cures probably comes from someplace that cares about me, please, consider showing that concern some other way. Some way that doesn’t actually hurt me and make me feel like I’m a wuss or a failure because red onion juice, sunrise hot yoga, or just a lot of Advil isn’t going to cure what’s wrong with me. I like flowers!
  4. This is a long-term plan. I appreciate that you keep hoping I’ll just wake up and be miraculously okay. But I can’t do that. I’d just be crushed day after day. I need to accept the reality of my situation — this is long term. I’ve been fighting heart problems for over 10 years — I was born with some of these conditions. Note that this is NOT the same thing as “giving up.” This doesn’t mean I quit following whatever plan might let me get through some semblance of life — you know, that plan I develop (-ed) with a lot of professionals? It means that spiritually, emotionally, and physically, it’s better for me to accept where I am.
  5. I will sometimes need help. This might be everything from a phone call to distract me to rides to the hospital. I will do my best not to ask for help unless I really need it. Occasionally, however, I ask for help because I thought I would need help, and then come to find out, I was actually okay. This doesn’t mean that I was shamming, looking for sympathy, trying to dodge gas prices, or whatever — or that I might not need help again in the future just because this one day, I was good. It just means I miscalculated. And I probably feel terrible about it.
  6. I might look like a perfectly normal, able-bodied young woman. That doesn’t mean that I am.
  7. Just because I don’t go always accept invites for late-night parties or play ultimate Frisbee with y’all doesn’t mean, dear friends, that I don’t still care about you! Or that I don’t want to be friends anymore! I just am not physically capable of hanging out the way you do. We might have to figure something else out. I appreciate being invited and included as much as possible anyway — let me be the judge of what I can and cannot do.
  8. Some days I might be able to stick around for events, and sometimes not… it depends on the day and how I’m doing. You might not realize that I played around with med timing, modified sleep schedules, skipped doing the laundry and the grocery shopping, took naps, etc., maybe for days beforehand, so I could stay for that concert or wedding dinner. Just because it happened once doesn’t mean the next time Taco Tuesday is proposed, I’ll be good for it… and it doesn’t mean that I don’t want to do it, either.
  9.  Please don’t minimize what it is I’m going through. Don’t call it “my little ticker” or “a wee bit of discomfort.” Words like “teensy,” “itty-bitty,” “tiny winy,” “just,” and “only” should also generally be avoided. I may be a petite young woman. I am not an infant. I am not stupid.
  10. “Push through the pain, get out and about, it will be good for you, maybe all you need is a distraction.” See above…. Don’t minimize what I’m going through. Remember that I have a plan in place with an awful lot of caring, competent doctors, and with them I decide when it is best to exercise. Do not assume that all I have to do to conquer my physical ailments is to have a positive mental outlook! Taking on too much, pushing through the pain, getting out and doing things — it can set me back so much, hurt me unbelievably. As does your disappointment in me when I decide that it wasn’t in my best interest to take that job, or go out that night, or go for a run. Trust me. I want to do things, too. I will whenever I can.
  11. Please don’t be ageist. I hear a lot of “but you’re so young!” and “you have as many doctor’s appointments as an old person.” People get sick. All ages, all races, all nationalities. (I also know we, in Western society, think it is tragic when illness claims someone young, with all that life and promise — like illness isn’t also horrid when you’re middle-aged, or elderly!) But bringing up my age rubs cultural expectations in my face, and then countless fears and worries well up — I should be active and working and own a house and maybe have kids! How am I going to afford being ill on my limited budget, saddled with education loans and just getting started….Will I ever get a job when the field is so competitive and I’m damaged goods? Why take on a broken adjunct when you can get a shiny new one? Will anyone ever want to be with me, since I’m like this? I know most people who make those comments don’t even realize what they’ve done to me, and some will think I overreact. But it is what happens, every time, and then I have to battle those demons. Every time. Making comments about my age is really unproductive.
  12.  Don’t reduce me to my illness. Don’t ignore that it is part of me. I am affected by my condition, yes. I am also more than a blob of muscles and nerves and organs and skin that is malfunctioning. That duality is hard for me to manage, and I understand how it can be difficult to comprehend for someone not walking in my shoes (and believe me, I profoundly hope that you do not experience chronic pain and illness!). All I ask is that you try to understand, as will I, and hopefully we can meet in the middle.
Advertisements

2 thoughts on “An open letter…

  1. Oh my gosh I totally agree with this post! I’m a “young chronic pain” sufferer as well and I’ve had doctors tell me I’m too young to be in this much pain! Your post really said a lot of things I’ve felt for along time. Keep writing! ❤️

    Liked by 1 person

Leave a Reply

Please log in using one of these methods to post your comment:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s