I am so glad to be introducing you to our first guest writer of the series, Rachel! We were able to meet through the wonderful world of Twitter and I am so glad that our paths were able to cross! She is a fabulous person and a wonderful supporter! Be sure to visit her blog and say hello after reading today’s post!
First off, let me introduce myself. My name is Rachel. I have been married to my wonderful husband for close to four and a half years. I have Crohn’s Disease. I was diagnosed when I was seventeen. I am now twenty-four. My husband and I are also dealing with infertility. You can read my blog at www.rachelsgettingthere.com
As I said, I was diagnosed at seventeen, so my husband knew what he was getting himself into when he married me. When we first started dating, he researched Crohn’s Disease and read everything he could find about the treatments and the prognosis. I think that him knowing about my illness when we married was definitely a plus because he sort of knew what to expect.
We talked about a lot of things before we got married. We set rules for communication. Communication has always been very important in our relationship. We have a policy in our marriage that we call ‘The No Ugliness Policy.’ It applies to all areas of our marriage. The No Ugliness Policy is an agreement not to say or do anything intentionally hurtful during any disagreement, argument, or discussion. If one of us breaks the policy we apologize immediately. You should never set out to hurt the person that you love. With Crohn’s, like all other areas of our marriage, we listen to each other and we keep it kind and constructive.
My husband was raised in a household where you didn’t go to the doctor unless something was bleeding profusely and/or was life threatening. If it wasn’t going to kill you, you had to suck it up and go on with your day. My husband is still that way. He once went on a business trip while sick with pneumonia! Obviously, with a chronic illness ‘sucking it up’ just doesn’t work all of the time. Sometimes I have to rest to avoid getting sicker. If I am in an active flare I have no choice but to rest. If I start having symptoms of a flare I have to go to the doctor immediately before it gets bad. It took my husband a while to get used to this. We had to talk about the importance of preventative care (rest, stress reduction, regular doctors appointments), we had to weigh the benefits and risks of all of my treatment options, and at times we have had to make decisions that were financially hard on us because of my health.
The secret to communication isn’t really a secret at all. You have to listen to your partner as much as you talk. It sounds simple, but it isn’t. Listening means keeping your mind open to the possibility that you might be wrong. You have to make compromises. For example, my husband’s mother lives very far from us. A few years ago she was going to be just one state over visiting his brother a couple of weeks after I got out of the hospital due to a flare-up. I felt terrible, but my husband doesn’t get to see his mom that often. It would have been selfish of me to not go with him to see his mom. It was hard and I crashed the next day, but I went. My husband has also had to adjust to the fact that when we do something that is physically taxing for me (like a trip or even family get-togethers) I have to crash afterward. Through communication he has learned that chronic pain is exhausting and I can’t just push through it all the time.
My husband is a professional fixer. He is a process improvement engineer to be exact. He has had to learn that no matter how much he wants to, he can’t fix my Crohn’s Disease. I’ve had to learn that he is going to try to fix it for me anyway. It’s his nature. It’s his way of showing that he loves me, but I wouldn’t know that if we didn’t communicate about it. If I didn’t know why he tries so hard to ‘fix’ me I would think that he was angry at me, when he is actually just angry at an illness that he can’t fix for me.
When one spouse has a chronic illness it definitely complicates a marriage, but it doesn’t have to make it worse. It can make it better. Being completely open with my husband about how I’m feeling has at times been uncomfortable for me, but the results have been so worth it. I get mad sometimes that I have to deal with Crohn’s disease while all the other people my age are so healthy. My husband just holds me and lets me cry when I’m mad. He has helped me make important decisions about my treatment when I’ve been too upset to really make the best decision myself. He truly is my partner. I have Crohn’s, but in a way, so does he. I’ve got to say, I sure am glad that I get to face it with an ally who loves me and supports me. I wouldn’t have that if we weren’t so open and honest about our thoughts and feelings.
some great thoughts. i esp relate to the story about his mom. recently, i came home to my BF having heard his dad was very ill. he said he felt we should go up there the next day….i told him we were going right then.
i had to drive for various reasons…i have severe back issues and have been laregly bedridden since feb but i knew he needed to be there (and needed me to drive). it was a 2.5h trip and HARD (driving is the hardest thing with my current problem), as was the whole visit. it knocked me off my feet even more than usual for the next week (already stayed in bed when i could, but it made even that very painful). i had to disappear a few times in the trip to rest. but you do what needs to be done sometimes. and you balance…he knew i did what i could so understood when i needed to be given quiet time etc. endo). his dad is better and the outlook has improved but i’d have never forgiven myself if he missed a final moment.
he’s been SO good about how much this pain flare has impacted our lives. the back pain has been there since we got together but never this severe. he was awesome caring for me post major surgery and even sat and held my hand in the recovery room where no visitors are really allowed. no one expected this turn…he DID know there’d be health issues though given the added battle with endo but bed-ridden is new. i know it is tough on him to and i know how lucky i am to have him. so i will also make sure that, when i can, i step up and fight harder when he needs me to be the strong one
Thank you so much for sharing this part of your story!
Sssssssso jealous i CANT say i have that type of husband he doesn’t believe in Fibro so he doesn’t anything is wrong w me and doesn’t sympathize u r ssssso blessed
Thanks for this lovely post.
My husband is a wonderful support to me and takes awesome care of me. It’s still hard on your relationship, though, but knowing you have a partner who is there for you through thick and thin is a wonderful comfort.
I am so glad you found this post helpful! I completely agree in that I have a fabulous husband who is a 100% supportive and taking amazing care of me but there are times where the burden of battling chronic illness bubbles up and can affect our relationship. When I get overly fatigued, I become overly-emotional and my communication skills are lacking majorly. My husband often reminds me that when I feel like he is angered at me, it is not the case. He gets frustrated and angry at my illness, not me. I think tips like this are great reminders!