August 24, 2017

Loving Someone with Chronic Fatigue: 7 Things to Know.

Warning: Naughty language ahead!


“Your body is the ground metaphor of your life, the expression of your existence. It is your bible, your encyclopedia, your life story. Everything that happens to you is stored and reflected in your body. Your body knows; your body tells. The relationship of your self to your body is indivisible, inescapable, unavoidable.” ~ Gabrielle Roth


Today I will not be getting out of bed.

My boyfriend wakes up on a Saturday morning eager and excited for the weekend adventures ahead…he rolls over with that excitement in his eyes, and in an instant I can see his disappointment.

This weekend our plans will be cancelled.

Today my blood has been mixed with cement and the life has been drained from my soul.

Today I am not Jess. I am my tired body, and no amount of shame or guilt or pushing will change that.

I see him roll over. Sad. Trying not to blame me or my body. Trying to find compassion. Trying to understand what it must feel like to be suddenly overtaken by this unavoidable, inescapable fatigue.

I see he wants to be with Jess. I see he chose Jess. He didn’t choose my chronic fatigue.

If my body is the expression of my existence, then my existence is unbearable, and he doesn’t want it anymore. If the relationship of your self to your body is unavoidable, then what about the relationship your partner has to your body? Do they have a choice? How do we manage a romantic relationship when one of the people in that relationship is also managing a chronic health condition?

These are the questions I am dedicating my life to.

How do we manage this third entity that shows up at totally inopportune times and rips the life right out of us? How do we have a relationship with another human being when our relationship with our body has to be our number one priority? How do we create an equal relationship based on love and independence and freedom when sometimes we need to be completely looked after? How do we not let our condition overtake our love with its rules and rigidity and darkness?

The truth is I don’t fucking know how to do it, but what I do know is it became much easier once I accepted the truth: I have chronic fatigue. I have struggled with it for many years. Sometimes I am totally capable of living a normal life and sometimes I simply cannot get out of bed. I know the foods I have to eat, the exercise I have to do. I know the cleanses and the enemas. I know organic. I know sleep. I know vitamins and minerals. I know not to work too hard. I know therapy. I know sunshine and rest. I know how to look after myself, and when I finally accepted the darkness that is my illness, I was able to show up for my relationship in a far healthier way.

While all the therapy in the world will not take away the guilt I feel at seeing my partner’s sad eyes as he realises I won’t be coming with him to a party—again—I now know that pushing my body to act in ways that don’t feel good will end up holding me back from a whole lot more than just that one party.

And when my boyfriend gets angry, we yell, we cry and we process it together. We look at chronic fatigue as our child, and if we nurture her and look after her, she will grow, flourish and bloom. But if we push her to places she is not ready for, she will fall.

These are some of the biggest lessons I’ve had to learn about managing a chronic health condition in a relationship:

1. Sometimes I need to be looked after, and that is okay. That means that my boyfriend may have to cook and clean more than he would like. I am not lazy. I am not incapable. I need his help, and that is okay. And ultimately, I had to get better at asking for help.

2. Being sick makes me feel vulnerable all the fucking time, and that makes me feel crazy. Sometimes I will need my boyfriend to sit with me while I cry, yell, and scream. I also need him to cry, yell, and scream. Ultimately, I know this is not his battle to fight, and for that reason I have found that seeing a therapist has made it far easier to manage my crazy and show up in a healthier way.

3. I found I needed a support group. So far it includes only me and my best friend, who also has chronic fatigue. You are invited, too. I now see the value in sharing my experience, in not suffering in silence, and in finding solace with people who can relate to my story.

4. This is hard to admit, but I cannot work full-time. I cannot party all weekend, and I need to be in bed by 9:30 p.m. Phew…it’s tough admitting that, but doing so allows me to create space so that I can show up more fully in my life.

I want to live my life. I don’t want to lie in bed all day depressed watching re-runs of “Grey’s Anatomy.” And I am the only person who can take responsibility for that.

5. I had to find friends who supported me. Due to my inability to handle my own illness and the grief and depression that surrounded it, I lost many friends. Friends who didn’t understand. Friends who weren’t patient. Friends who told me I looked fine and should have a drink and toughen up.

Because of the social pressure I felt, I stopped answering my phone. I never accepted invitations out. It became so draining to be around people and pretend I was fine that I found it was far easier to isolate myself. There are still people in my life who don’t understand how bad it got for me because I hid it so well.

Accepting my illness meant accepting that I would find friends who wouldn’t leave. Opening up to them and sharing my experience has been one of the biggest challenges I have ever faced. The friends I have now are the friends who will pick me up off the floor on the bad days and drink wine with me on the good days. They accept me because I finally accepted myself. It’s been a process.

6. I take time for myself—seriously! I go away on trips alone. Do juice cleanses. Sit and rest. Sit and recuperate. I exit the daily grind of my work, my relationship, and my life to give my body a break.

7. I have come to accept that this is lifelong. I am not alone. Everyone has their struggles and this is mine. I see that I am enough and my love is worth it even though I can’t always show up the way I would like to.

Ultimately, I know that in order to show up for my relationship with my partner, I have to be willing to show up for myself. To be vulnerable. To show my weaknesses. There is a beautiful power in having the courage to show up as our whole, unfiltered self—a strength I have found that makes my love unique.

I meet countless men and women who tell me how hard their illness is on their relationship. Who feel the enormity of the guilt and the shame, which only adds fuel to any illness. I meet partners who leave because it’s too hard, I meet partners who stay and end up becoming caregivers.

And also, and most impressively, I meet partners who stay and show up. They know that no one is perfect and that your illness is also your badass superpower. Your sensitivity is what makes you wonderful. These partners process with each other when it all gets too hard, and I see them taking responsibility for themselves and their emotions that come up. I see couples who show up every day. Some days are easy and beautiful. Some days suck big time.

I now see my chronic fatigue as my wonder woman strength. The sun that shines out of my ass. The very thing that has hurt me has become my friend because it has forced me to stop and care for myself in a whole new way. What potential partner can’t see the amazingness in that?!

So where does this leave me?

I am fighting for my life. Fighting for my body. Fighting for my love. All I can do is show up everyday and make the choice to accept the challenge I have been given. Fair or not, it is mine.

If he loves me, he will choose to accept this challenge too.

If he doesn’t, he probably wasn’t worth it anyway, because I know I am.

If what Gabrielle Roth says is true. If my body is the metaphor for my life, the expression of my existence, then I want my expression to be bloody-freaking-fantastic. I want to work with my body, love it, and nurture it. I don’t want to be angry at it anymore. I want my expression to be love and acceptance and the ability to show up everyday.

That’s all I can ask of myself. That’s all I can ask of my partner.


Author: Jess Colangelo
Image: Lucas Pimenta/Unsplash
Editor: Emily Bartran
Copy Editor: Catherine Monkman
Social Editor: Leah Sugerman

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