The unseen burden of partners of chronically ill: the unspoken and forgotten caregivers…
The unseen burden of partners of chronically ill loved ones.
I’m one of the millions of husbands caring for their chronically ill wives. There is this unseen burden of partners of chronically ill that no one talks about.
So, why does no one talk about family caregivers? We do matter! But still, we are forgotten…
This post aims to reveal the unseen burden of partners of chronically ill loved ones.
Because for every person suffering from chronic illness, there is an army of those who support them.
I want you all to know that I haven’t written this to make sufferers upset. The reason is actually the opposite!
It’s to help you understand what we are going through so you can contribute to helping us rather than feel like a burden.
And yes – it can be done without much effort from your side.
There are little things that matter. So, before we move on to more detailed information, here are, in a nutshell, 17 unspoken truths:
- Our mental well-being.
- Why no one talk about us?
- Our partner always comes first.
- No one listens to what we have to say.
- We are judged despite our best efforts.
- We give up what we love doing.
- We need time for respite.
- Thank you. That’s rare.
- Sex? What is that?
- We are invisible.
- We have feelings.
- We worry about you.
- We step on eggshells.
- Give us time to adjust.
- We too have sleepless nights.
- Constant repetition can be tiring.
- We rarely have time for ourselves.
Our mental well-being.
I am one of the millions of men around the world who live with someone who has a chronic illness that seems like a third person in their relationship.
I love my wife dearly and I am never going to leave her.
She suffers from endometriosis and fibromyalgia. Her multiple chronic illnesses and chronic pain don’t bother me.
Even the medication, hospital visits, and specialists that come with it aren’t overwhelming.
But the mental health problems that come with her chronic illnesses, that sometimes affect me.
To the point that sometimes, just sometimes, I want to run. But thinking of it makes me feel guilty. Why should it?
I have the right to escape from this overwhelming, repetitive nature of my wife’s OCD and overall anxiety.
Because I don’t sufferer from it it’s difficult for her to understand how the repetitiveness makes me feel.
Sometimes I just want to scream but I stop myself from doing so because if I did, I wouldn’t be in her good books and I have to be. Because I’m the only person she trusts that can protect her.
If I were to express my thoughts, she would feel guilty and it would make her feel worse.
This is why I keep my mouth shut.
By my face cannot lie. I may look grumpy sometimes. And guess what? I’m being told that I look grumpy and that makes her feel bad.
I can’t hide my face, no one can. Do you see the vicious cycle I’m in?
You know we won’t leave you, we love you, don’t forget about that – we’re still here, aren’t we? Try to stop overthinking something that doesn’t happen.
Doing things for you does NOT bother us, but when you repeat things over and over, it can drive us a little mad.
Sometimes more than a little. But we won’t tell you that, because it would make you feel worse and guilty. We feel guilty thinking this way too, but we can’t help it.
Please, simply acknowledge that, remind yourself what you do, every time you catch yourself repeating the same thing over and over.
Whenever you see our facial expression being grumpy-looking, don’t judge. Just ask us what’s wrong, or simply realize, that you may be repeating yourself.
Why no one talks about us?
No one ever talks about family caregivers, supporters of their loved ones. Call us whatever you wish, we are forgotten.
We work hard on trying to make our loved ones feel the best they can because they are in need of our help.
But what about us? Don’t we matter?
We have feelings too, we have our moments of doubt and the right to express our emotions.
We are not machines but humans.
Talking about the unseen burden of partners of chronically ill loved ones, we need to be taken into consideration. Where chronic illness strikes one partner, it always affects the other.
Let’s spread awareness about the unseen burden of partners of chronically ill.
You can do it by commenting on various social media posts. You can also talk to friends and other people.
Every time someone asks you how you feel, please, don’t forget about us, tell them that the illness affects you both. We really appreciate it.
You may also spread awareness by writing your own story on our blog, or other blogs for that matter.
Lastly, you can create your own blog (like I did), and spread awareness. Be more in control.
Our partner always comes first
This is a no-brainer, people suffering from endometriosis and fibromyalgia suffer a great deal.
Daily chronic pain can be unbearable, especially if, as it’s in my wife’s case, the pain hits you at the same time from endometriosis and fibromyalgia.
Despite their bravery, they need our support, sometimes more than ever.
After all, we’re not the ones who suffer. But does it mean we have to be ignored? Well, I answered this already…
What can I say here… we won’t stop supporting you. That’s the solution.
No one listens to what we have to say.
It refers to the above point – we are expected to listen, act to please others, do everything for our chronically ill partners.
But who is going to listen to us?
We aren’t in any health wars. We are often marginalized.
Whenever I want to say something, chip into a conversation, I have something important to say, I cannot put a word in.
My wife talks a lot about her problems that there is no room for me, it doesn’t matter what I have to say.
I feel like her feelings are important and I don’t want to overwrite them with my own, because people who suffer are more important than those who care for them.
But are they?
If we were given space to express what we feel it would make things a lot easier for us.
In the same way as you, we can’t accumulate our emotions because that eventually leads to a breaking point.
If that happens, it can lead to resentment and unnecessary stress. We want to be heard.
We are judged despite our best efforts.
Sometimes we get so overwhelmed with our efforts that we need a break.
We’re not only husbands. We become cleaners, cooks, nurses, advocates, and more…
We do all that, it becomes a habit, no one even takes notice of it. We do.
There are times when your loved one might ask you to do something and you don’t deliver. She gets upset and tells you that you never do anything for her.
How does it make us feel..?
We don’t do it because we were told to, we support our partners because we care for them.
We don’t expect anything in return but it would make a big difference if we weren’t judged. We actually do a lot!
We give up what we love doing.
I used to go to the gym 7 days a week, sometimes even twice a day. I love a good workout.
Over time, my wife’s illnesses pushed her towards suicidal thoughts and attempts. I had to stay home.
I took two months time off work, and gave up my love for the gym because my wife’s life mattered to me more than my hubby’s.
It was hard to acknowledge, but I managed to find another passion, and I love it so much, I work for it to become my full-time job.
It’s blogging. I absolutely adore it! I can’t imagine doing anything else. This is my future, this is what I want to do.
But hey, there is a catch!
I became passionate about blogging my wife said I became obsessed with it.
Naturally, it affected our time together. I admit I blogged even during conversations with her.
It looked like I wasn’t focused, as if I was somewhere else half of the time. Despite the fact it wasn’t true, she took it that way.
I had to cut down on blogging and my website suffered a lot. I became upset, she felt guilty.
We both understood where we went wrong.
My wife bought me weights so I can train anytime I want at home. Once or twice a week I still go to my gym.
I spend more time with her and do exercise more again. Everybody wins!
My second passion – blogging – we had a chat, and I explained to my wife my need for blogging.
Not only it is my passion when it becomes my full-time job, but I’ll also be free to spend a lot of time with her, be there for her, have a secured financial future.
Blogging will make our life better, I said, if I work hard and consistently that is. Well, I do.
But I promised not to obsess about it. I only do it when she goes to sleep. Luckily for me, she’s an early bird. I have 3 to 4 hours every evening.
So, the solution to this unseen burden of partners of chronically ill is simply compromising.
We need time for respite!
As much as our support can be overwhelming, we need our time off.
It is important because it helps avoid caregiver burnout. We are only humans and need some time off.
We cannot go on without a break. We need some kind of escape, asylum.
Gym, blogging, whatever it is, you have your own precious places you like to escape to. We need our moment to do something we love.
It helps us recharge our batteries and be ready to help you be full of energy.
Thank you. That’s rare.
Some caregivers never hear thank you, for others it is rare.
It is not that we expect this from our chronically ill partners but it would give us wings and the feeling of appreciation.
My wife says thank you almost every single day.
She does it often via text, when I’m at work or when I do her shopping.
It seems like nothing, silly little words but it makes me feel good because it comes from her heart.
I never ask for it. She simply does it.
It means the world though, please, do say it once in a while…
Sex? What is that?
Well, endometriosis is one of the worst chronic diseases that can affect a couple.
Sex can be extremely painful, and even though it varies from woman to woman (some don’t experience pain), it affects my wife very much.
To some couples, low mood or lack of sex altogether drives them to breaking point.
The endometriosis divorce rate is higher than that of the “healthy” couples.
We find our way around it. Even though sex isn’t the most important part of the world, it can make a woman feel less womanly, less sexy, and unfulfilled.
Men, make them feel special! It isn’t always about sex.
Besides, sex isn’t always about penetration. Experiment with each other, it actually makes it more fun.
I’ll leave it to your imagination…
We are invisible!
No one in society talks about family caregivers. Unfortunately, this is how it goes.
People focus so much on those who suffer we are invisible.
And yet, we exist.
There are countless blogs from the perspective of those who suffer but nobody talks about us.
I found one of them. This is the exact reason why I created Worry Head.
To spread awareness about the unspoken and forgotten family caregivers. To write about the unseen burden of partners of chronically ill.
We have feelings…
The way you feel makes us upset. It’s not your fault. It’s because we care. To worry comes naturally if you loved someone and want the best for them.
Whenever I’m at work, I think about how my wife feels.
Luckily for me, am an optimist! It doesn’t affect me as much as others.
But let’s acknowledge the facts here. Some of the supporters become anxious, sometimes even depressed.
The fact that your loved one suffers makes you feel bad as it is.
Not being ill yourself makes you feel guilty. Why do I deserve to be healthy when she goes through hell?
Chronic illness affects your relationship as a whole, your finances, your family, social, and events professional life.
It isn’t easy for both parties, but we are expected to suck it up and deal with it.
For me, my optimism is the solution. I cannot help it to see a way out of everything.
But some of you may not feel that way. Falling into depression and anxiety can make you feel trapped.
Especially, when in such a state you are no help to your partner.
It is important to realize a few facts:
Anxiety is simply thinking about the future. You try to plan and prepare yourself for any outcome that may occur.
But you can’t. Overthinking leads you to the point of no return, you begin to believe your thoughts. That’s anxiety.
Saying that a piece of advice I can give you is to look at the facts.
99% of the things we think about never even happen.
Having no proof, no evidence for the future events (your thoughts), makes you realize after xxx times that your thoughts are faulty.
Anxiety is imagination. Think of this in these terms. It’s what it is.
Depression works in similar ways. We think about the past. The difference is, we begin to think so much about it, it blends with reality.
We worry about you.
It’s self-explanatory. We do. Especially at work, when we’re out of control of helping you.
We might be the most loving and caring partners, but being at work we cannot hold, hug, kiss or comfort you.
When my wife felt at most fragile, wanting to take her own life, I was at work that very first time.
And there were many…
Naturally, I left work on the spot hearing my wife’s scared, crying voice over the phone.
The fact that I was on my way reassured her, and it turned out to be okay.
It affected me really strongly because I did not know if she was going to commit to it during my 1,5-hour journey.
It traumatized me for weeks to come.
I’ve learned what triggers my wife’s thoughts and that helps me predict how she’s going to feel on a particular day.
If I noticed she’s not being her usual self, I take a day of work.
Of course, I don’t ask anyone to take time off work, but for me, the safety of my wife is far more important than my job. Besides, it doesn’t happen often and our bosses are humans, they can be understanding.
We step on eggshells…
Chronic illness such as endometriosis makes women struggle to feel okay. Every day, trying to be well is a full-time job.
It’s extremely difficult for them because of the trauma, loss, and grief they experience.
Some women will never have kids, and this makes them feel less womanly, they will never be mothers. This burden is difficult to deal with. Some women have enough of such a life and try to end it.
I struggled a lot with my M’s suicidal attempts. We went through a really hard period of time.
I personally struggled and worried about her, daily!
Communicate, there is nothing better than open conversation. You need to both express what you feel and do it often.
Such communication works as therapy because you don’t bottle your feelings inside but let them go. That goes you a better chance of avoiding a serious breakdown!
Give us time to adjust…
We know that you suffer but we are trying to grasp all the information about the unseen burden of partners’ illnesses, help them at the same time, take care of other duties…
It all takes time, please, give it to us, don’t rush us, we are going to get there. If you did not plan that, we wouldn’t be by your side.
We too have sleepless nights!
Whenever you have a flare-up of your symptoms in the middle of the night, we are there for you.
We try our best to make you comfortable. When you’re in pain, we provide what you need to minimize it. We comfort you when you anxious, and help you through sleepless nights.
Every time you wake up, we wake up too!
It can be very tiring for both of us, we are in this together.
I always supply my wife with water, her acid medication, bring her a hot water bottle in need to fight her endometriosis pain, and apply her CBD balm for anxiety and chronic pain. I apply Magnesium for her cramps.
I always ask her if she needs anything before we go to bed. I want to be prepared.
Whenever her symptoms kick in in the middle of the night, I get on my feet and support her.
During many of her panic attacks in the past, I’ve learned how to help her control them. They usually last 10 to 15 minutes, but my reassurance shortened them to a couple of minutes, eventually, they disappeared.
Be there for each other, prepare yourselves for the night. It will make things much easier…
Constant repetition can be tiring!
My wife suffers from Obsessive-Compulsive Disorder…
She struggles to find time in the day for herself because her OCD takes a lot of energy and precious time. At times it can become severe when she’s more stressed, or when chronic pain strikes.
Naturally, it affects me sometimes. Her repetitive nature of doing things can be tiring for me because I don’t suffer from it myself, and I see things differently.
Quite often it may happen that she repeats herself saying something when she’s stressed with work. She gets frustrated and repeats the same things in a different way, sometimes not realizing it.
I do notice, it isn’t easy to take it.
Long story short, to save yourself time and energy guys – you can’t fix your partner’s illness, try to work on yourself. Practice patience.
Trust me, this is the best solution I can give you!
We rarely have time for ourselves…
Taking care of someone else takes time. Not only that! You have to juggle between work, kids, cooking, chores, shopping, etc…
It doesn’t leave much free time left for you. And that’s on a good day! Imagine a bad one. When your partner has a flare-up, your priority is her. You put everything else aside.
But the fact that you have to go back to your chores after, over a long period of time, makes you exhausted.
It isn’t easy.
So, what can you do? Practice self-care. need to take care of yourself whenever you find free time.
You need your respite time, get away from it all, at least for a few moments. Take breaks when you can. Don’t be a hero! We deserve time off.
Do more of what makes you happy, and do it more often.
Remember that your partner’s illness won’t flare every single day, at least not for many in a row.
You will find time for yourself, use it for doing whatever your heart desire. You deserve it, my friend!
I hope I shined some light on the unseen burden of partners of chronically ill loved ones subject, I live this life every day. I work full-time, blog part-time, support my beautiful Italian wife. If I manage to juggle all these, you can manage too!
Wishing you all the very best, and crossing my fingers for you!
Take care for now!
Hi, I’m Lucjan! The reason why I decided to create this blog was my beautiful wife, who experienced a lot of pain in life, but also the lack of information about endometriosis and fibromyalgia for men…