Advice for my younger self on becoming my husband’s carer

What this writer wishes she knew sooner about life with hemophilia

Alliah Czarielle avatar

by Alliah Czarielle |

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Dear Younger Self,

Congratulations! You’ve found a person who’ll stick with you for life. What a blessing!

Jared happens to have hemophilia B and a seizure disorder, and you’re going to be his carer. Big deal, right? I’m sure you’re feeling brave and unfazed now, as is the case for many 20-somethings who look forward to a bright future. But let me tell you now that reality won’t always be as kind to you as you think.

Still, you can relax. Because I, your future self, am here to give you some handy tips for this new caregiving role.

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Know that there are good days and bad days

Some bleeds are worse than others, so hang in there on bad days, and look forward to the better ones. Caring can be hard, but just take it one day at a time. Even when Jared isn’t bleed-free, be thankful for the days when he can manage by himself.

Don’t agonize over him being unable to do certain things

The reality of chronic illness is that it renders people physically incapable of certain activities. His hemophilia and arthropathic ankles will keep him from running, whereas you ran marathons in college. But don’t feel disappointed because he’ll still support you from a distance.

Even if he can’t ride a bicycle due to seizures, Jared will let you purchase a mountain bike and go on solo rides. He can’t roller-skate, but your daughter will, and he’ll assist her on the roller-skating rink and take pictures of her, even if he must remain in his walking shoes.

Appreciate his efforts to involve himself in activities that he can’t do. It’s a small personal sacrifice he knows he can make for people he cares about. But even when you absolutely can’t do things together, don’t sweat it. Don’t feel bad about proceeding with the activity anyway, even if you must do so alone.

Don’t hesitate to reach out to old friends or to make new ones. Find people who enjoy the same hobbies. After all, it’s good to broaden your support system beyond yourself and your family.

Don’t give up on your own dreams

Keep living your own life as an individual. Remember who you were before you met Jared, and know that you’re still that person, despite choosing to live a partnered life.

In a healthy partnership, both partners must choose the path of compromise when disagreements or difficulties arise. In your case, you might have to rearrange your schedule or take on more responsibilities while looking after Jared.

You might occasionally feel disappointed when your attempts at cooking simple food fail, so you choose to get takeout instead while waiting for him to recover (after all, he’s the kitchen guru). But you’re right to consider this a necessary sacrifice so you and your family can get by.

Small, temporary sacrifices like this should be fine. Yet I strongly advise against bigger ones, such as completely letting go of hobbies that matter, stopping activities that are necessary for your lifestyle, or changing your entire life so you can always be there for your partner. Know that you and Jared don’t have to do everything together; in fact, spending some time apart is healthy.

At the end of the day, your partner will want you to live a whole and fulfilled life — both with him and in spite of him. He doesn’t want to be a burden to anyone, especially to you.

Don’t live his life for him

Support Jared in his desires and help him improve his quality of life. Ask questions about how you can make things easier for him. But don’t push your own opinions or your understanding of his condition on him! At the end of the day, it’s his life to live. And when it comes to Jared’s body and health, he has the best understanding of it. (His body, his rules!)

Be open with him

Don’t hesitate to tell Jared everything, especially the heavy things. Being a caregiver isn’t always easy, and he knows this. If you don’t tell him how he can support you, he won’t know.

Avoid trauma-dumping on your loved ones

When the going gets tough, it can be tempting to pour all of your emotions onto your loved ones. But even though venting can be helpful in the short term, it can destroy relationships if it happens repetitively, without ever resolving the issues. Seek professional help if things get out of hand.

Above anything else, remember you’re only human

You can’t always be the perfect partner or the perfect carer. So don’t sweat it if you make mistakes along the way. You’re there for each other, and you’ve got each other’s back. And that’s all that matters.

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.


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