Chronic Illness and Marriage
3 Aug
Today’s guest post is from my bloggy bestie, Kerri. You can read more about her at her blog, Living With Chronic Illness.
I am so excited to be a guest blogger on Young Wife’s blog! Thank you so much for the invitation! This is my first guest post, so forgive me if I’m a little green!
I “met” Ashley via blogging. Her husband and I have something in common: we both live with chronic illness. I love reading her blog from a caretaker’s point of view, because it really helps me to understand my husband.
I have a neuromuscular disease called myasthenia gravis, or MG. The kind of MG I have is quite severe, and affects less than 10 people per million. It is called Musk+ MG or MMG. Some of the symptoms include trouble breathing, speaking, swallowing, and problems with overall muscle weakness. I also have trouble with my eyes. I get double vision a lot.
The scariest thing about MG is the unpredictability. I can be okay one minute, and literally be in crisis the next. Something can set off the MG, and I’ll immediately have trouble breathing. That in turn affects everything else and it’s a downward spiral from there. I also have a trach.
Being married has been one of the biggest blessings in my life. My husband and I were married for only 6 weeks when I went into the hospital for an MRI under sedation. I quit breathing, had to be emergently intubated, and had to stay in the hospital on and off (mostly on) for 3 months.
When I got home, I had to sleep in a hospital bed in our living room. My husband slept on the couch for SIX MONTHS so he could take care of me during the night. I had a breathing machine to help me stay breathing at night, and I frequently needed suction to keep my trach clear. I was too weak to do it myself at the time, so Doug would get up and take care of me, and then go back to sleep on the couch. I had a bag of jingle bells I would ring to wake him up.
Many men would have simply felt like they had not signed up for all of this, and left. My husband is a rare breed. He is amazing. God gave him every talent he would ever need to take care of me.
Being married with a chronic illness can be very trying, however. Here are some tips that have helped Doug and me in our ten year marriage (and illness!)
Communicate, communicate, communicate. Make sure you both feel able to express emotion without penalty. If you need to cry, cry. If you need to vent, vent. Be clear about what you’re trying to express. One thing that has helped Doug and me tremendously is that we repeat back what we heard the other person say. You would be amazed at how different those two statements can be!
For example, Doug might say, “Man, I didn’t sleep very good last night. I’m tired.” And I might HEAR, “You kept me up all night coughing and needing suction and I resent you for it.” See what I mean? He really, truly just could have been making a statement. Do. Not. Assume.
Another thing that helps is to have a support system in place. For the chronically ill individual, it is important to have people who REALLY understand you. My husband understands probably more than anyone because he is with me all the time, and has seen every aspect of my disease.
Even he, however, can’t know exactly how I feel, because he doesn’t have the limitations I do. Don’t expect your spouse to understand exactly what you’re going through. They can’t. And it’s not fair to expect them to. Find support groups locally, if you’re too ill to go to one, find something online.
I cannot tell you what a Godsend the internet has become for me since I have been diagnosed. I have met so many godly men and women with chronic illnesses. Some have supportive spouses and families, and sadly, some do not.
Encourage your main caregiver (especially if it is your spouse) to spend some time away from you! I know it may sound strange, but someone else can fill in for them for a while. That time is so important. If your caregiver is like my husband, he won’t want to take it. But we have to remember that they are still normal, healthy, “regular” people, and they need an outlet as well.
Some of the best advice I’ve ever gotten is this: you will never get all of your needs met by one person. You need friends. You need family support. You need the support of people like you that are chronically ill, so you can talk to them about the ins and outs of your experience.
I know beyond a shadow of a doubt that my husband loves me. Not just because he takes care of me, either. To show how much I love him in return, I try not to allow him, or force him, to take 100% responsibility for things I can’t do. I know I used to rely on him more than I should have, and it really started taking its toll.
And by all means, talk to a pastor or counselor. Whether you became ill before or after you got married, the stress chronic illness puts on a marriage is immense. You need an outlet. You need to grieve. And that process is different for everyone. Sometimes a pastor or counselor can kind of hold up a reflection of you and your spouse, and help you to see things that may have been hidden before.
Thanks again, Ashley for this wonderful opportunity! It has been an honor to be a guest writer on your blog. I thank God our paths have crossed, and pray that you and David continue to work together to fight his illness as Doug and I fight mine. God Bless!
Wonderful post!
Stopping by from Kerri’s blog. Great post.
Cheers
- CoconutPalmDesigns
Kerri, I really apppreciate you taking the time to share your wisdom with us. You and Doug are great examples and I wanted to Thank You for taking the time to share these encouraging words!
It’s always lovely to hear from women who are the “healthy” one and validating for men; too often the men with illness feel like such the minority, but it’s because they just are not as vocal, especially online. thanks for sharing! Would love for you to submit other post too for us as guest blogger at invisibleillnessweek.com
As I lay here, in bed, all day, sobbing that no one understands me, I find you. Thank you for sharing. I am the one with a chronic illness and pain. 15 years of marriage, 5 kids, 5 miscarriages and then on October of 2004, we knew something was wrong, very wrong. Even though we don’t have a complete diagnoisis yet, I’ve done and tried e everything under the sun, including brain surgery. My pain level is an 7/8 daily. It has destroyed every part of my life and I feel so alone. My husband quit his very lucrative job last August to begin his own business out of our home. We’ve made the very devesting choice to send our older 2 kids to private school to lighten the load.
The tears are rolling down my face now and I can’t see through all the snot, but thank you for sharing. And if one more person tells me to take a Tylenol, I might punch them in the face.
Krist