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Through the Eyes of a Partner

Walking in my shoes I see a lot about how painful things are, how much we go through and how hard navigating the medical field is. Which is valid, we go through so much that it is vital we share. What I also see is a lot of talk about how people are so “lucky” to have a partner or how some spoonies wish they had someone to rely on. Being ill with someone is hard, being ill alone is even harder. As a Spoonie I also only see when they do have that person they only share the good things, which is something I’m also guilty of. What I don’t see is anyone talking about what it’s actually like being a partner to someone who’s chronically ill and how to navigate becoming and being that Person for Life.

How many of you who deal with illness first hand ask your some-what healthy partner how they cope with your ailments? If they are overwhelmed/concerned with your medical treatment? I’m sure you can tell by their actions sometimes but what about those topics that aren’t necessarily apart of regular conversations?

Being a partner to someone whose ill is not just about being physically there for them, It’s more complex than that. It’s about navigating your entire relationship as what the patient/partner does or doesn’t do in turn effects you. As someone who loves an average healthy individual I wanted to get some insight as to how or what one would say it is like being in a relationship with a Spoonie. Here are some questions and responses I collected as part of this blog. These partners were very honest with their responses.

Questions/Responses:

How many years have you been helping your partner battle their illness/es?

Seth, Husband of @lauren_lloyd_12

8 years

Dylan Husband of Beka

2 years

Husband of @irockthekeys

23yrs

Nick, My fiancé, @thechronicallyillqueen

10yrs

What would you say your life has been like since finding out your partner has a/an illness/es?

Seth

“Protective I guess, I always have to be concerned about some of the smallest things but yet know how to determine what’s small and what’s not.”

Dylan

“Life has been a roller coaster of learning, tears, stress, hope, and love.

I've had to try to understand what most couldn't fathom and learn as we go.

It's not easy, but I'm there for her when I can be and I've learned how to make a good grilled cheese with pickles in it (her favourite sandwich when she's flaring).

The most difficult parts are watching her go through things I can't help her with, other than hold her hand. Living on one income during the long disability process, hasn't been fun, but we've made it work.”

Husband of @irockthekeys

“Planning.. Adjusting daily.. Limited to going out to events depending on how she feels.”

Nick

“Sad that the person I love is in pain, some days more evident than others and that their is not much that I can do to heal that at times. Happy to see her doing well on the days she can be more active than most.”

What’s one thing you’d say to someone just finding out their partner has an Illness(or multiple)?

Seth

“All illnesses are different and come with different severities, so what you read online isn't always true. However, a lot of discussion and planning is needed, if you are secure enough to stick around. Remember though anything can still happen to you.”

Dylan

“Have patience, educate yourself on their conditions and listen to them and understand reading about their Illness/es and living it are two different things.”

Husband of @irockthekeys

“It's not an overnight adjustment... We have to learn as we go and it's learning everyday.”

Nick

“Be patient, listen, and help out the best you can.”

What would you tell a father, if he now has to take care of his kids and partner somewhat alone?

Seth

“Think positive and remember medicine is always changing and getting better. Just because something has happened to your partner or one child doesn't mean that it's inevitable to happen to your children or partner. Every situation is different and requires different care. However let your children live and grow, don't cripple them with their disease bc of the fear of what can happen.”

Dylan

“I can't speak to that personally as we don't have children, however I imagine it can't be easy.

But don't forget about yourself. Even if it's a half hour, don't feel guilty about it or needing to talk to someone like a therapist. We're only human.”

Husband of @irockthekeys

“Time to man up.. No time to be complacent.. You need to be a decision maker if your wife is not able to manage for that day.”

Nick

“That each day will have its own challenges but when she’s down and flaring I know I gotta step up. Especially because I don’t want her worrying about her mom duties when she’s flaring and worried about herself.”


How do you manage your fears and doubts?

Seth

“Take everything one step at a time and have faith that things are going to work out. Just trying to enjoy what time is left with my wife.”

Dylan

“Communication and weed lol

I'm in the process of finding a therapist for myself as well.”

Husband of @irockthekeys

“Openly talking about feelings...”

Nick

“Some days it’s tough, I try to keep my mind from going into those dark places as best as possible. I try to balance that out by focusing on positive things or keeping my mind occupied through various ways. When times get overwhelming I do get sad and in ways feel useless that I have no I idea on how to best help.”

What’s something you’ve learned about yourself while being with your ill partner?

Seth

“I have realized that I can be really caring but also numb to small things. I'm still learning that I have to care for myself as much as I have to care for her even though my health problems are less severe bc if not I can't do it all when I'm not in a good condition.”

Dylan

“I've learned that I'm stronger than I thought I was and a better caretaker too.

But I've always been this kind of a person, so I don't think I've grown too much.”

Husband of @irockthekeys

“That I need to step up more in terms of responsibilities. Being there to help and support my wife anyway you can, whether it's having to do household chores or drive her to appointments.”

Nick

“That I take my health from granted at times and I that I am fortunate that I was given a body that works as most people would define as ‘effective’.”

What do you think about when you hear your partner being mistreated throughout their medical experience?

Seth

“Initially my response is anger and that they wouldn't say such things if I was there but it makes me stress that Lauren has to learn to cope with it and I hope these people don't have to deal with illnesses like we have to because they don't have the mental capability to handle it all.”

Dylan

“I think it's wrong.

Medical professionals should be professional and admit when they don't know the answers.

Chronic illnesses partners, just like my wife, are sick and looking for answers/treatments, they don't deserve to be mistreated.

Personally, depending on their severity of the mistreatment, they should lose their medical licenses.

When I hear what some doctors have told my wife, it makes me angry and that we're wasting time/money.

It also prolongs the search for answers. Which isn't fair to her.”

Husband of @irockthekeys

“ I really didn't experience this as she has some awesome healthcare givers.”

Nick

“Sad that she’s not being believed or taken seriously when she discusses her health and that she is possibly being discriminated against due to age and gender.”

My takeaway from this is, no matter the amount of years together each felt the amount was insignificant to how much they love their Spoonie. They feel the flares stress, the pain watching. They want to take be there for their Spoonie for the sake of love. They want to provide a safe place and support the ones they love. Each takes the time to educate themselves on what effects each individual family. Also taking their own mental health seriously and making sure they are also in okay health and shape to handle such struggles.

Overall a great partner will see a Spoonie as whole and worthy of love and care. This is something I hope helps the Spoonies out there understand that our partners aren’t entitled to stick around but choose to because they love everything about you including your ailments. The good ones are willing to make it work, willing to learn as to make the entire situation that much easier. If you’re single, struggling in a relationship with someone who isn’t your rock and instead being a tumbleweed and leaving you high and dry, please know that Real Love is out there and Real Partners are out there. Real Relationships take work, dedication and a willingness to grow together, add ailments and relationships become that much harder.

Insight Through the Eyes of a Partner. ❤️

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