This post is dedicated to the most amazing, wonderful and caring person I know. He is my closest friend and my soulmate – my husband. <3
Chronic illness is hard. Marriage is hard.
You know what is even more challenging?
That is not to suggest abled couples don’t face their challenges, because every relationship has difficulties. However, there are additional factors in a marriage where one or both spouses are disabled.
I met my spouse in high school. He became my best friend before he was ever anything else to me. We got married six months after I graduated high school. Let me preface this by explaining – a week after I graduated high school I began chemotherapy for liver disease. But like four days before I started my treatment, my then boyfriend proposed to me (we had been together for 2.5 years by now), after graduating from BMT for the Air Force. Of course, I said yes! But then we had to go our separate ways for awhile. He went off to tech school and I continued working, started college and continued my chemotherapy.
We married on December 19, 2011, the same day we officially began “dating”, our three year anniversary. Coincidentally, it was also four days before my chemotherapy ended! We have now been married for over four years and together seven.
Despite this being arguably one of the most stressful years, it has been the absolute best and most fulfilling years of our marriage. It took a lot to get here. The first three years of our marriage were incredibly difficult. For a blink of an eye, I was worried we weren’t going to make it. Not because of my husband, or myself specifically; but rather because our entire marriage has been built on the foundation of tragedy and neither of us were poised enough to deal with it in healthy ways. We both came from abusive homes. We both have struggled with depression. I’ve struggled with health issues for the entirety of our relationship.
People said we were too young – I was 18, he was 19. People asked me if I was pregnant, as if that is the only sane reason to marry someone. People rolled their eyes at me. People are ridiculous.
I’ve loved my husband for a long time… even in the really rough years. He has been there for me in my weakest hours. He has fed me, bathed me, held my hair as I worshiped the porcelain goddess, held me when the pain was too much, stayed with me in the hospital after my brain surgery – he has done it all for me. I will be forever grateful for every day I have with him. He never ceases to amaze me with his compassion, kindness, affection and he never stops challenging me to be a better human. I love him more today than I did the day we got married.
Here is the best advice I have for chronically ill and their partners!
- Communicate. This is seriously the most fundamental part of any relationship, not just marriage. If you’re feeling overwhelmed, tell your partner and make a plan to reduce stress/responsibilities so you can compose yourself. If you’re feeling insecure, angry, sad, upset, depressed, attacked, happy, whatever tell your partner. There is nothing too small to tell them.
- Take care of your spouse. I know this one isn’t easy. As a person with chronic illness, you’re probably relying on your partner a lot – they may even be your caregiver to an extent. This is definitely the second most important rule to marriage if you’re chronically ill. Caretaker burnout is a real and it is crucial to prevent this, for the safety and health of your partner. Make sure your partner is eating, sleeping and getting down time from you, your illness and caretaking. This might involve asking family and friends for help, or hiring some hands, so your partner can have time out. I’d strongly recommend talking to your partner about attending therapy or a support group, so they have additional resources at their disposal (also, you should consider therapy/support groups too, you both need third party people who you can rely on).
- Establish your boundaries clearly. Boundaries are there to protect you from other people, but also to protect you from yourself – so you don’t ever have to compromise your mental and physical well-being for another person. This can be as small as you not wishing to discuss something if the other is yelling, or as big as choosing to get something like a DNR. And remember, boundaries are a two-way street. There may be things your partner is uncomfortable doing for you and that is okay. This goes back to the first tip – communicate! You need to talk about these boundaries, or they don’t work.
- Check-in with your partner every single day. This one is so simple! There are lots of ways to check in – “how are you?”, “did you have a good day?”, “is there anything I can do for you?”. This goes both ways. Ask your partner how they are doing mentally, emotionally and physically.
- Use words and actions of affirmation/appreciation. You love this person. Make sure they know this and thank them for their efforts in the relationship, and they should return the favor. When I had my brain surgery, every day, I thanked my husband for making sure I took my medications, ate and stayed clean. Now that I am more able, I thank him for being so patient with my recovery, or for supporting my passions. He responds really well to words of appreciation. Your partner might be a bit different, so you’ll need to tailor this to your marriage individually.
These are the broad strokes of marriage and are fundamental for all relationships – but the chronically ill face unique challenges. Remember, it’s a journey and some days things won’t be easy. It is okay to need help, to reach out and to struggle. It is okay to be vulnerable with your partner.