The Partner of Someone with an Invisible Disease

This morning I came across the article below on Facebook from the page ButYouDontLookSick.com.

5 Lessons I’ve Learned As the Partner of Someone with an Invisible Disease

After reading the article I went to share it on Facebook with a short post.  My post kept getting longer so I decided to move my post over here to cfhappens.com for easier posting and more room without clogging up peoples newsfeed on Facebook. I only know how it is to live with CF and not to be the ones that love and care for me. It is hard on the people with the disability/disease/ailment/etc. to “put” their spouse and family through all of what the disease entails. There are many times I feel bad for messing up plans or putting a stop sign in the middle of life.  I hate that CF is the deciding factor on our plans many times.  There are many times that I am worn out, sick, short of breath, wheezing, etc and we have plans.  I do treatments and take whatever medicine I can to trick my body into thinking it is good to go.  Although there are times that I just can’t muster up enough energy or power to go.  That’s when I feel bad for my husband having to make the choice to stay home and be bored with me while I’m as much excitement as a wet towel or go to the scheduled plans without me and worrying about me or wishing I was there with him.  It just plain sucks.

If you don’t know, my husband and I grew up together in the same town.  He was in my older brothers class and his younger brother was in my class.  We both were married to other people and happened to get divorced around the same time.  We reconnected on myspace of all places while he was in Korea with the Air Force.  He had to make the decision of whether or not to get more serious with me.  He knew about my CF.  He being the medical person he is, he opened up his books and did some studying.  He had to decide if he wanted to live a life with me and my CF.  He didn’t have to make that decision just for himself but for his kids as well.  There were some that said (to him or under their breath) “why would you marry her, she’s just going to die?” Well, thanks for pointing that out Captain Obvious.  Of course once he got home from Korea and we had our first date it sealed the deal.  We were stuck with each other for life!  haha

It was hard for me not to have fears having had an ex that didn’t “wan’t to deal with CF anymore” (among other issues that were the ultimate dissolve of our marriage) after 13 years together, 7 of those married years.  I didn’t want to get close to anyone again because I didn’t want to go through that again.  Of course I wanted someone to live life with but I didn’t want to “hurt them” by being sick all the time and ultimately dying leaving them here to live without me.

I have a choice in the matter. I have to live with CF.  I can’t get away from it.  Everyone else has a choice to deal with it and be a part of my life. Yes, I am blessed that there are people that want to endure my life with me but I would be lying if I told you I didn’t think about them and the hurt/sadness/helplessness they endure and will when I leave this earth.

My husband and I have had many conversations about the future and the what if’s.  In a world where all things are good, we would die next to each other after living a good long life together so that we wouldn’t have to live a single minute without the other.  The thought of leaving him, the kids and the rest of my family behind makes me sad and is a reason I fight every day.

I’m sorry I got, what some would call, morbid on such a memorable day as the 4th of July but with my brain I have to write things down when they come to my mind or they will be lost forever.

I didn’t mean this to be a morbid/depressing post.  I just wanted to share that not only do I fight every day my family is there with me and I am thankful for that.

I hope everyone is having a great holiday weekend!  Stay safe everyone!

Until next time…

4 thoughts on “The Partner of Someone with an Invisible Disease

  1. You’re just being real. When I went to visit Megan today, you were on my mind. I asked her to look out for you and I prayed that your husband would have understanding about how hard this is for you, so to see this post, is surprising. He has to be a very special man, but he is also very blessed that you are his wife. Trust me, when I tell you that you are worth everything your family deals with. They WANT to support you.

  2. Oh when I think about the thousands of miles Johnny has driven me (to all pf the nations pancreatic ctrs), all the flights he took (because he left me the car wherever it was that I was at, awaiting care), all the er chairs that he spends hour after hour in, over and over again and all witg no sleep, just to rush back to work to catch up,
    The fact that (TMI ALERT) we havent had sex in 6 and a half yrs now, and that he had since had a heart attack, although his cardiologist scratches his head as Johnny has low cholesterol and blood pressure (i think its all caused by a broken heart myself)…
    The constant excuses he had to give his boss in pushing off deadlines for jobs and how my daughter also left her job to come down 3 days after her wedding/honeymoon (that i had to miss as i was admitted) and how tragic ive made everyones lives now, thru no doing of my own.
    If i could ever even think to repay them for the support, ….
    Well, that word takes on a huge meaning that those never experiencing chronic illnesses would never comprehend,
    But if i could repay them,
    It would take an eternity…

    The stress a caregiver had is great… As they offer their friend or family member true unconditional love…

    I know when my husband had his heart attack, i was a disaster. And wheb my daughter had to have surgery on a finger because of a dog attacking her precious kitty, i went frantic…
    And they are both fine now so the traumatic end of those events are over now…

    But mine continues
    And morphs
    And is constant
    And turning and churning into a new, fresh, shocking and debilitating invention of what it once was.
    So the dance continues daily while they are mite than just observers:
    Theyre all partners in this elaborate toe-tapping of fancy footwork…
    In scheduling and finances and bartering and manipulation of my life’s events. Making every appt and picking up rx’s and me from various hospitals… The neverending story amplified!!!
    Its all done out of love… All of the pain that is now being equally shared.. And I know it is all a true gift from the LORD above! I am blessed!!!!

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