Chronic Illness Is Not the Problem: You Can Be Complete

In my ME/CFS support group on Facebook, one of the most common questions I see asked is: "How well does your spouse accept your illness?" Illness can validate or break a marriage. Reading the comments is always interesting, because there are two types of answers. The more common answer is that the spouse is really moody, rude, uninterested, and distant. The other answer is that the spouse is extremely supportive, loving, encouraging, and willing to do as much as possible to help. 

When we enter into a marriage, we vow to love each other "in sickness and in health." It's really hard to comprehend what "sickness" means in a marriage when it becomes a chronic (long-term or permanent) condition. It's easy to think you love a person so much that you'll endure their short-term disabilities, because you know they'll return to being fully functional again and they'll always meet your needs. How many people enter into a marriage with any concept of what it means to take care of their spouse if they get sick and they never get better? What if your spouse, one day, stops meeting all your needs because they can't physically do it anymore? Will you still love this person who can't meet your needs?

It's a tough situation, and it's one that is more and more common because the rates of chronic illness keep increasing. I think the problem is that when a couple gets married to have their needs met, there are so many ways in which they can fail each other. We all have needs, and it's reasonable to have expectations of your spouse that you both discuss and agree upon. Humans are designed to be dependent on each other. 

I have observed that the couples that withstand chronic illness are the ones who live with gratitude for each other, despite all circumstances. They didn't marry to meet their needs, they married because they want to take care of each other so they could share life fully together. They don't have separate burdens, they emotionally carry the burdens together. They choose to be united partners in all things, even when it's hard. They trust each other to fully love each other to the best of their ability. They each fully commit to being emotionally and spiritually open with each other, including the healthy spouse expressing to the sick spouse that it's tiring. They don't "protect" each other from their emotions. They're fully honest and they find ways to ease each other's pain through trust, compassion, care, and dedication.

I have observed, and experienced, that the couples who can't withstand chronic illness are the ones who feel the need to compartmentalize to "protect" the marriage. "Being ill is your thing, not my thing, so my thing needs to be doing all the work since you can't." Or, "Being ill is my burden, I don't want you to carry it, so I need stay away from you when I'm not feeling well enough." This way of thinking creates resentment, a lack of trust, and emotional distance. The resentment from both people will fester until it erodes any love there ever was. I believe that the illness doesn't cause the marriage to fall apart, it only reveals how weak it was. A marriage built on meeting each other's emotional needs is very weak, because relying on another person to make you feel emotionally stable is weak. 

Life isn't easy alone, so it's common to think that finding a partner will make life easier. It doesn't, because having a partner means you have to care about needs beyond your own needs, and treat them like your own needs. Both people in a relationship need to be equally committed to giving themselves fully to each other. That's not easy. If you don't love yourself without a partner, you will doubt yourself even more with a partner because a partner will expose all of your shortcomings. 

In my observations, marriages that fail due to chronic illness didn't actually fail due to the chronic illness. It failed due to the emotional immaturity of one or both partners. It failed because one or both of the people couldn't love themselves well enough to properly love the other. No one is prepared for illness, but that doesn't mean we can't learn to adapt our lives around illness. It requires a lot of maturity. 

I have had to work extremely hard on my emotions to endure all of this. I found myself trying to escape into books, series, and video games to avoid my pain. I tried to confront my pain and it led me to feeling suicidal. I practiced focusing on positivity for a while to encourage myself to "win" and beat my illness. I dedicated my time and energy to God in order to avoid working on myself alone, begging God to control my life for me. I bargained a lot, looking for anything that could save me from the reality of living my life with so many limitations. And the truth is, 50% of that was because I didn't feel secure in my marriage, and I felt the need to become obsessive about fixing my health so I could feel secure again. It didn't work. I didn't feel insecure because of my illness, the illness just revealed the problems. 

Accepting my body and my illness without worrying about what anyone else thinks has reduced my stress considerably. If I had a partner that could accept it with me, that would be beautiful. As it is, being alone has freed up so much of my energy. The anxiety and emotional stress is greatly reduced. I'm able to work on building up my own emotional security. I'm in therapy, I'm doing workbooks, and I'm reading a lot. I've come to discover that I was handling my illness well enough, but I wasn't handling how he reacted to my illness. I found the DBT workbook to be really natural and easy for me, and it's a workbook meant to help people through trauma. I think I've developed the skills intuitively, because I respect myself enough and I'm very introspective. My illness isn't feeling like trauma anymore. I just feel like this is who I am. I have physical limitations, but so what? I'm a complete person regardless of my physical abilities. The issue is when my partner doesn't treat me as complete. 

Getting divorced has made me feel 50% less need to obsess over my health. That's good and bad. The good is that my stress about it is gone. Stress makes everything way worse. The bad is that I'm being less dedicated to taking care of myself. My illness requires me to manage it with extreme detail, but I have been relaxing a lot on the details. As a result, my symptoms have been increasing. I actually do have more energy now, but I'm more inflamed, in more pain, having increased metabolism issues, facing more brain fog again, very irregular periods, and so on. I just want a break from extreme management of my health... my illness feels like the abusive partner in my life. 

So, I've been bleeding for 17 days in a row now, and not on my period. Now my period is supposed to start any moment. It's always something. On top of that, I can't fully swallow anything without food particles getting stuck at the top of my throat. It feels like extra effort is required to swallow. Is it time for another thyroid test? Probably.

Absolutely - "Nowhere to Hide"

Think I need to get up and run

What would I become if freedom begun at the tip of my tongue?

I'm just wanting to feel something pure and real

But I'm holding back 'cause I'm not sure what to pray for

Lord, help me

I'm tearing everything in my view, pushing everything off the tables

Tearing everything right off the walls, might look unstable

But at least

After everything has come down, I might have a chance at relief

Maybe then I'll make something new, it's not you, it's just me

Muse - "Dead Inside"

(In my opinion, this is the best song Muse ever wrote, because it captures the human experience so perfectly, even beyond a broken relationship, and the final catharsis in the song is what makes it so powerful.)

Feel me now, hold me please

I need you to see who I am

Open up to me, stop hiding from me

It's hurting, babe

Only you can stop the pain

Don't leave me out in the cold

Don't leave me out to die

I gave you everything, I can't give you anymore

Now I've become just like you

My lips feel warm to the touch

But my words seem so alive

My skin is warm to caress

I'll control and hypnotize

You've taught me to lie without a trace

And to kill with no remorse

On the outside, I'm the greatest guy

Now I'm dead inside