If Someone You Love Has a Chronic Illness

I’ve been kind of invisible on the blog lately and want to apologize!  It would be easy to say that looking for a job, running an Etsy shop, running errands and doing household tasks, studying, taking photos, etc, etc, take up so much time that I’m not leaving enough time to blog.  Yeah, well… that wouldn’t really be true.  There has been time to read up on what some other bloggers are doing, find articles pertaining to various camera related issues, and watch the occasional show on TV (hubby and I love “The Big Bang Theory“, among others).  Truth is, I’ve been dealing with some yucky pain and fatigue issues lately because of my CFS/CFIDS/ME and Fibromyalgia(Please note that although both links open the Center for Disease Control website, it is not necessarily the most informative.  I chose to link to it because it is a trustworthy and reputable source.)

Living with chronic illness is one of the most difficult things I have faced in my life.  Please understand – even though I have been diagnosed with both of these debilitating conditions I am in better shape than a lot of people out there.  There are days, sometimes several in a row, that my life resembles that of someone who is completely normal and pain-free.  At other times, however, I’m not as lucky.  To say that it’s been an adjustment for me would be a huge understatement!  I’ve lived in this body my whole life and gotten to know its rhythms and functions… what it’s capable of and what limitations it faces.  CFS and Fibro caused me to relearn most of what I knew, but I have all the time in the world to do so since it’s my body 24/7 for 365 days each year.  It’s not just about me, though, and that is unfamiliar terrain that it is taking longer to learn to navigate.

My husband is a wonderful man.  Like anyone else I know, he has his issues and struggles and faces his own internal and external battles on a daily basis.  The last couple of years have brought him pain and misery with a knee injury that has created physical constraints that he had never faced before.  Chronic pain doesn’t always make him a lamb to live with, but we manage pretty harmoniously, for the most part.  I can understand dealing with aches and pains every day and try to support him in any way I am able.  It’s tougher for him, though…  until recently constant pain wasn’t something he had to deal with.  Whenever I need a cheerleader he’s quick to step up and give me a pep talk or support, and he’s even been great about that when it comes to all the medical issues I’ve faced over the last few years.  Yet, he can’t really understand what I’m going through and sometimes it’s so difficult to explain that, like anyone in these circumstances, he gets frustrated with me and things get a little tense.

I love my hubby and want to be a good wife.  There are times when I even feel guilty because of things I’m not able to accomplish in a day that most people could complete in an hour.  Whenever I’m in those dark times I’m able to pull through because I know what’s going on within my body is out of my control.  My husband doesn’t have that comfort.  Every once in a blue moon we have to try a different approach to figure out how to make everything in our daily lives work smoothly when I have this invisible illness that can sideline me for hours or days.  It’s tough – I’m not going to lie!  And situations like this can do one of two things – break down a relationship or strengthen it.  My hope and prayer is that the way we deal with this reflects the latter…

On that note, I’ve been reading several different sources about communicating with people about having an illness they can’t see or understand.  There are lots of articles and resources out there for caretakers, spouses, families and friends of people living with a chronic illness, but there are two that really spoke to me.  I would highly encourage reading them if you, or someone you know, goes through each day with a chronic condition.  The first is “The Spoon Theory” written by Christine Miserandino.  She is a speaker, journalist, blogger and patient advocate, and she lives with Lupus.  Her spoon theory helped me figure out a way to explain my limitations in a way that other people may finally understand!  The second is an “Open Letter to Normals” (not sure of the author) and addresses the way I feel sometimes when someone judges me without knowing what is going on behind my mask.  Both of these have a completely different approach but could be equally helpful.  I urge you to read them if you know someone living with some sort of illness/disease, or read them and pass them along if the person suffering is you…

I’ve rattled on enough, I think.  My husband is actually waiting for me to get off the computer now so we can meet some friends for lunch.  : )   There’s just one other thing I’d like to add before I go.  It’s difficult sometimes, I confess, to have patience about things that I can’t understand.  Although I wish it was easier for my husband, I am actually very happy he doesn’t understand.  That he can’t empathize.  This is my disability and I wouldn’t wish it on any other person!  The fact that he struggles with it only makes me more thankful that he doesn’t know what it’s like.  He is a brave, loyal, loving man, and I’m lucky and blessed that he chose to be with me – broken and all!  I would keep him from having to deal with this at all, if possible, but I can’t… So instead, I’m doing my best to give him an insight and some tools to assist him, and hoping that if you’re facing something similar maybe it helped you too.  🙂

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6 thoughts on “If Someone You Love Has a Chronic Illness”

  1. thank you, sweetheart. i am so sorry you have to deal with this on a daily basis. i am thankful you can use your talents to help others understand. i love you and am so proud of you. mom.

    1. Thanks so much, mom! Your support and encouragement mean the world to me. So much of what is good about me came from you – you inspire me to be a better person. : ) Enough mushy. It’s actually my ability to write and my sarcastic wit that should be attributed to your influence. just kidding – lol! Love you!!

  2. Thank you so much for sharing, and I look forward to reading more/getting to know your experiences. I also am on the adventure of living life with a chronic illness and have found that blogging is a really helpful outlet for me, as well as being a very easy place for my friends and loved ones to gain a little more insight into this journey. I wish you well, and thank you again for sharing.

    1. Thanks so much for stopping by, Aimee. I’m so sorry to hear that you are also living with a chronic illness! Certainly, I wouldn’t wish this on anyone, but I’m glad to hear that blogging has been a useful outlet for you. : ) I have good days and bad days and there are times that I still struggle with coming to terms with it… One day at a time, though! I’ll definitely come by and check out your blog and wish you the best of luck! : )

  3. I can sooooo relate to chronic illness, chronic pain. That has been my life for the last few years. My conditions are undiagnosed and baffled doctors that now I am in alternative therapy treatments, which are helping. Blogging about it and creativity help. I hope they are helping you. Thanks for sharing your story and I wish you well.
    http://fergiemoto.wordpress.com/

    1. It’s always nice to know you’re not alone in soemthing, however, I’m sorry to hear you can understand so well! I’m glad alternative therapies are helping and hope they will continue to do so! Being in pain and suffering without a diagnosis is so difficult… I wish you all the best in health and peace of mind. Thank you for sharing and please feel free to stop by anytime! 🙂

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