An Open Letter to Exhausted Care Partners: I See You

To those caring for a spouse or partner with chronic illness:

Maybe you knew about your partner’s condition from the get-go. Or maybe they developed a chronic illness or disability somewhere along the road, and you stuck around, ever the loyal companion. You may feel bound by spousal duties to care for them — after all, your vows likely included the phrase “for better or for worse.” Or perhaps you simply want to be a good friend and partner.

You love being with them. Generally speaking, your relationship is great! But sometimes, caring for them drains your physical and emotional energy. And at the end of the day, you feel exhausted.

Let me tell you this, my friend: We’re not very different.

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This August, I’ll celebrate my fourth anniversary with my husband, Jared, who was born with severe hemophilia B and now struggles with a seizure disorder as well.

Our marriage is by no means perfect. We have good days and bad days. Though we generally communicate well with each other, there are times when pride takes over and our connection deteriorates. We admit that we both have a lot to work on as individuals. Having lived with a disability all his life, Jared sometimes struggles to adjust to being around others. Meanwhile, I am diagnosed with bipolar 2 disorder and attention-deficit hyperactivity disorder, which cause unstable moods and behavioral changes that may affect others.

Whenever Jared gets a bleed, he may be debilitated for days on end, until the injury fully heals. And because prophylactic therapy isn’t available in the Philippines, where we live, this happens about once a month.

I admit those days can be difficult. Seeing him struggle with pain makes me sad. I also feel powerless knowing there is nothing I can do but wait it out.

Then there is the intense boredom that comes with realizing that I must go through our shared routine by myself. My feet feel heavy whenever exercise time comes because we always go to the gym or perform our fitness routines together. Some days I can’t even bring myself to work out at all.

If you’ve ever felt lonely while waiting for your spouse’s condition to improve, know that it’s perfectly logical to feel that way. It’s OK to feel sad, bored, annoyed, or impatient when your partner is at a low point health-wise. These are perfectly normal reactions to any stressful situation.

Acknowledge them. Feel them. Communicate them to your partner. (Trust me, they love you, and they won’t hold your own feelings against you.) But please don’t take your feelings out on your partner.

So go ahead, give yourself space to embrace your emotions. Take some time off if you need to. Take a walk, engage in a beloved hobby, or do something relaxing. Don’t feel guilty about getting that massage. Communicate to your partner why you need it, and they likely won’t mind. After all, they care about you and your well-being. The last thing your partner wants is to see themselves as a burden to you.

Even if you’re overwhelmed with your carer duties, it won’t hurt to take some time off now and then. Find someone who can help you with caregiving tasks. I am fortunate to have a trusted helper and companion at home who can bring food and other necessities to my husband when I am too preoccupied or tired to do so myself.

You don’t have to sacrifice everything for your partner — in fact, they probably don’t want you to. You have your own desires and goals, and being a carer doesn’t change that.

Your partner has their own dreams, too. And while you can help them achieve their dreams, you cannot achieve their dreams for them.

Finally, I salute you! Being in a committed relationship with another person always involves some degree of sacrifice. Regardless of their health situation, sharing a life with someone else is challenging. After all, you two are individuals, with your own needs and preferences. No matter how well you might relate to each other, at the end of the day, there’s no such thing as a 100% perfect match. Life is imperfect, and so are we.

I’d like to assume that things are going well for you, considering that you’ve been together all this time. If so, you must be willing to communicate and compromise — two things that are key ingredients of every lasting relationship.

Isn’t that wonderful?

Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.