It’s not always rainbows and butterflies…
Happy Friday Eve, my loves.
Next week is my 6 year anniversary. A lot of you know that I started to get sick with lupus just a mere few weeks after we returned from our honeymoon, so it sometimes feels like we never really got to have that newlywed “honeymoon phase.”
I wrote a post in March 2013 about how hard it’s been on our marriage, and I want to share it with you today. This has nothing to do with my writer’s block, by the way, I was planning to share this again for awhile. A few things have changed since I wrote this post, most notably, my undergoing a tubal ligation in November of 2013. I apologize to those of you that have already seen this post (wow, that means some of you have stuck around for a long time), but I want everyone who reads it to understand how hard dealing with chronic illness can be for all involved parties. It changes every aspect of life exponentially, not just for the sick person, but those close to him or her.
Marriage is tough. It’s a full time job. The people that tell you “Oh marriage is SO easy,” are lying. Through their teeth.
Don’t get me wrong, I LOVE being married. It comes naturally for the both of us, and we mesh. We are oh so different. Yet somehow, someway, we work.
But, things come along to test the waters: it may be someone you feel just “gets” you better and says the right things, a hot new secretary, infertility, your high school significant other you reconnected with on Facebook, a career move, tragedy, illness…
After an amazing honeymoon in Saint Lucia, Steve and I returned home, ready to start our married life together. We were already living in sin, so to be honest, not much changed post-wedding; we had nicer pots and pans, and I had a new last name.
- Systemic Lupus Erythematosis
- Immune Thrombocytopenia Purpura
- Acquired Angioedema (it’s very rare, and I couldn’t find a reputable site for this)
I learned that while I probably had it for quite some time, being out in the sun on my honeymoon is what triggered this initial lupus flare. Exposure to ultraviolet light for extended periods can elicit the onset of disease.
Great. My body was literally rejecting the idea of marriage. Like when Carrie and Miranda try on tacky wedding dresses to get past her jitters of marrying Aidan, and she breaks out in a horrible rash at the sight of herself in a wedding dress.
It was frustrating, and I didn’t know how to get through to him. Of course, I never came out and asked him to come. I’m stubborn. I wanted him to want to come with me. But, let’s be real. Sometimes you just need to spell it out in plain English.
There were so many mistakes on both ends. When we talk about that time now, we know how different things could have been had we just communicated better.
I vaguely remember signing in, I took a seat, and noticed everyone around me. In pairs. Women with their husbands, boyfriends, lovers, brothers, sisters, mothers, daughters. Women completely bald, frail, with their ports and Med-Comp catheters hanging out. Women with IV nutrition going into them through portable pumps. They all had two things in common; they all had cancer, and they all had someone by their side.
My name was called, and I went up to the receptionist (I remember she got my name right and actually called me Marla… not Maria). We went through the normal doctor’s office sign-in motions; insurance card, copay, sign the HIPPA forms, and…
“Marla, who is your support person with you today?”
I fell apart. Sobbing. Ashamed, angry, scared and alone.
I never want to feel what I felt that day ever again.
Part of me hates airing out my dirty laundry like this, and I feel like I’m throwing him under the bus. My husband is a caring and loving person, and I will never find anyone that treats me better and
puts up with me provides for us like him. I’m not that naive, clueless wife making excuses for her absentee husband. He wasn’t out doing things he wasn’t supposed to be doing. I knew he wasn’t good at handling these type of situations when I married him. I’m the stronger one, and I’m fine with that. But at the time, I only wish he could have gotten past his reservations with it all to be there for me. I thought this whole marriage thing was about compromise.
It was hard to remember that while I was the one going through all this physically, he was still going through a lot emotionally. I was falling apart in front of his eyes, and he tells me now he was so scared. Little did I know he was making plans to take on as much side work as possible so I could stop working if it got to that point, talking to HR to get me on his health insurance, and paying off debt faster so things would be easier down the road. Doing those things were his way of dealing, and his way of supporting me.
But he never told me he was doing any of that. Again, why communication in any type of relationship is so important.
I was so bitter, and I did everything I could to push him away. He began to ask questions, and I would give him unclear explanations. I wanted to hurt him. I got work friends to hang out after so I didn’t have to go home. I loved my night classes. I found other people to confide in. I let myself lose sight of what was important, and gave up on him.
I remember one night I was crying (in both our defense, let me say that the amount of Prednisone I was on made me crazy. Prednisone can cause psychosis and I’m pretty sure I was close) and he was trying to help me. He asked what was wrong and all I could do was open the medicine cabinet, point to the 23 bottles of prescription medication with my name on them and scream “What the fuck do you think is wrong?!?!?”
I can truthfully say we are in a much better place, but it took a looooong time to get there. We went to a counselor together, and I went to a counselor on my own. I moved out for awhile. We were as close to becoming part of that 50% divorce rate statistic as a married couple could.
Giving up was too easy, the coward’s way out. Anyone can get divorced. I’ve never been a quitter, and I know I was raised better. It takes balls to fight for what you want, and realize what’s important. THAT’S the hard part of marriage. You can let the obstacles tear you apart, or you can learn from them.
Slowly but surely, we worked it out. I was able to forgive. Wounds started to heal. I told him what I needed in a partner, and that he needed to learn to bite the bullet and be there for me, no matter how uncomfortable it gets. And I would always do the same for him.
He comes with me to important doctors visits. He doesn’t need to say a word, just be there to hold my hand. He always offers, and I know it’s not just because he feels he has to. For routine visits it’s easier to go by myself, but those times when I need him, he is there.
We go to lupus support groups and seminars, and I really think it helps him just as much as it helps me. He takes part in discussions, asks questions, and does research on his own time. It’s a comfort to meet people going through the same thing, and I think it helps give him a better understanding of what I go through.
Except for when I wake up looking like Hitch, I look fine on the outside. I don’t “look” sick. That’s the thing about invisible illnesses. They’re invisible. I look at pictures from the past couple years, and even I have a hard time believing there is an all out war going on inside my body.
I never played the sick card. If anything, I played the “lupus can’t beat me!” card. I spent so much time fooling myself and everyone around me that I wasn’t sick, that it’s no wonder my husband had no idea what to think.
The same man that was once afraid to touch me, now buzzes my head with the concentration and precision of a barber. We laugh the entire time.
You take your marriage vows, and you say “in sickness and in health.” In your mind, you imagine the sickness part won’t come until after 60 years of wedded bliss together. In our case, it was after 26 days. It’s been five years, one week, and five days since we said “I do,” and I’m quite certain we’ve had enough health issues for any one lifetime. We were dealt a shitty hand so soon into our marriage, and it drastically changed everything we had planned.
Unless my diseases become better controlled, kids can be crossed off our list. It’s far too risky to get pregnant, but we had discussed adoption/fostering or egg donation and surrogacy. Sometimes I literally can’t get out of bed, and taking care of a little one just doesn’t seem feasible. That wouldn’t be fair to a baby, Steve or myself. It kills me. I hold my friends’ babies, and at times have to fight back tears.
The tropical beach vacations we always talked about taking will never be a reality. The sun is my worst enemy, and can trigger pain/lupus flare so bad I’m in bed for a week. Trips to Ocean City consist of me covered in SPF 100, wearing UV protective clothing, and a big floppy hat. We sold my beloved convertible.
We’ll never climb Mt. Everest together.
Just kidding, I would never do that anyway!
There are always going to be detours and dead-ends, and things won’t go as expected. That’s life. It’s far too easy to lose sight and give up; to become that dreaded statistic. We are far from perfect. We’ve come a hell of a way, yet we still trip up from time to time. That’s human nature. But, if you’re lucky enough to find someone willing to stumble along with you, grab their hand and hold on tight to each other. It ain’t always gonna be pretty, but in the end, it’s always worth it.