What I Wish My Loved Ones Understood About My Chronic Pain

What I Wish My Loved Ones Understood About My Chronic Pain

http://themighty.com/2016/01/what-i-wish-my-loved-ones-understood-about-my-chronic-pain/

Just like before I got ill, I still look forward to seeing my friends and family (for the holidays or otherwise) — probably even more so. But I must admit there are a few things I wish they knew.

I suffer from a multitude of chronic illnesses and have round-the-clock chronic pain. There are certain things that make my pain spike. I may seem whiny or “dramatic,” but please try to understand. I don’t want your pity, just your cooperation and understanding. Just to get here was a tremendous accomplishment for me. I’m already exhausted. Showering and getting dressed takes the majority of my energy and strength for the entire day. I am still just as excited to see you. In fact, probably more so than in the past, because now I am more aware of the preciousness in these moments. Also, I rarely get out, so this is a major social function for me! But, please try to keep cross-talk and multiple noises to a minimum. My illnesses already make it difficult to concentrate (if I’m having a hard time finding my words, this is all part of it). If you’re all talking over one another, not only is it extremely chaotic to me (I am normally alone all day), it literally affects my pain levels.

I know that my pain and illness make you uncomfortable, and the fact that I have to take medication is taboo. It’s a stigma I carry everywhere I go — literally. For your information, I would love to be able to be open about these things (which are a huge part of my life), at least with my nearest and dearest, without being subject to judgment or gossip. I actually want to be asked about my conditions. I know you don’t understand, so instead of avoiding the “elephant in the room,” just ask me! I promise, I won’t take this as an open invitation to complain all night. In fact, I’ll make a conscious effort to keep my explanations brief. Trust me, I don’t want to talk about it all night, either. But it is a huge part of my life, so just like I ask about your job and your relationship, ask about what consumes most of my time, energy and thought.

I take a lot of medications that make weight loss difficult, my ability to exercise is non-existent and three of my conditions affect my digestive system, as do many of my meds. I know I need to lose weight; you don’t need to point it out, even behind my back. Right now, I’m just trying to get by. Just because I’m eating the celebratory edible treats (just like you are) doesn’t mean I always eat this way. I know you’re well-intentioned, but if you’ve read about some new diet, treatment or fad, I promise, I’ve read it, too… and probably tried it. I know you’re trying to be helpful, but please, just keep it to yourself.

Don’t assume I don’t “do” anything. When I lived in Kenya, I learned that the standard American conversation opener, “What do you do?” is not always a polite question. We consider a person’s means of fiscal compensation to be a defining characteristic. In Kenya, income-based employment is so rare that asking the typical American intro question “What do you do?” is an insult. Nearly everyone gets up every day and “does” something to contribute. They might earn little to no money for it, but it doesn’t make it any less valuable and important. It doesn’t mean it’s not work. As a person who once prided herself on her independence, work and accomplishments, I am still a contributing member of society. So instead of thinking to yourself it’s unfortunate I cannot “work,” or that I seem like I should be able to hold some kind of employment, remember that it took almost all of my effort for the day just to get dressed and show up. The smile on my face is genuine, but the pain in my wavering voice is real, too.

Even though I am unable to commit to showing up to “work” every day, I do work. I work on researching, writing and speaking on behalf of myelf and others, and my writing is published at least once a month. Have you read it? It would mean everything to me if you did, and if you asked me about one of my articles or told me what you thought of it. If it wasn’t about pain, you likely would have.

Since pain is my constant companion, maybe you should try to get to know her. She sucks, but I’m stuck with her… kind of like your ex, who I made an effort to get to know, because I love you. Not to be snarky, I’m just saying…

5 Responses

  1. Bravo, my sentiments exactly. At least two thirds of this article hit the nail on the head with what I feel and do every day. Half of my day in the past was spent wondering if I was just imagining the pain I feel, the other half would be spent wondering why the people I love couldn’t comprehend the pain I am in. That is until I found this website and started reading everyone’s experience with chronic pain. I realized finally that I’m not alone, there are so many people out there that feel the same as I do, or close to it. I would really like to thank Pharmacist Steve for giving all of us a place to share our stories and speak our minds. The realization of knowing that I am not alone means more to me than you could ever know, Thank you again.

  2. What an excellent and well-said article. She points out what so many of us struggle with. The “family thing” is so heartbreaking.

  3. Steve if this isn’t your story please pass it on to the right person,,I’m so Sorry if I got it wrong,,Because I as a pain Patient appreciate you more than words can convey!! Thanks Steve

  4. Awe Steve ,,if this is Your Story ,Please know that I am a Pain Worrior along side You and suffer with You ,,daily,,Please know I’ve followed your story along with your triumphs as well as your amazing research,,I don’t know what I’d do without your phenomenal knowledge..
    I know how hard the work you research has helped me along with thousands of other Pain Worriors on this site,,as well as many other sites,,Not a day goes by that I don’t look for your helpful notes and articles..Your an asset to all of us here on the Pain website,, I truly appreciate all you do in helping us and pointing us to the proper stories .
    Your an asset of Great Importance to me as well as all who read your stories and fact based research..I’m not able to do all I can because of my health but you so willingly push yourself beyond barriers that most of us could only wish we could do,,for the tenacity that you put forth in all you do,,I’m Thanking you from every fiber of my broken being for the courage and strength that you push yourself thru just to help all of us..God Bless You and know your our go to Guy on here for help in most things that without you,,we couldn’t even know where to start…
    For You Steve i am Greatful and Thankful and indebted to you for as long as I can hang on..Again Thank You So much for being who you are,,,, a Selfless wonderful and Amazing Human with so much Compassion for your fellow Man,Woman and Child who’s ever had the chance to read and take in all You’ve shared for all of our cause,,Thanks Paula

  5. Thank you for sharing that I can truly relate.
    People ask me all the time what do you do? I hate it. It gets me really uneasy. I tend not to be around people because of those questions. Im 55 divorced because of “ALL” of this ,very lonely but the meds make me “NOT FUNCTION ” properly which is a problem for me. I am lonely all the time, Ill leave it there it gets old thinking about this stuff. and once again Thanks for your thoughts It really helped in some sort of way. I hope all get better for you. GOD BLESS.

Leave a Reply

Discover more from PHARMACIST STEVE

Subscribe now to keep reading and get access to the full archive.

Continue reading