Letters from a husband of a chronically ill wife: for their loved ones with endometriosis.

Letters to my wife…

Letters from a husband of a chronically ill wife is a guide for all the supporters who care for their loved ones with endometriosis.

I decided to write this article to spread awareness about the unspoken subject – the impact of endometriosis on the loved ones of those who suffer.

It begs the question – who’s the victim here? Undoubtedly my wife and all other endometriosis sufferers.

But what about us – the loving and supporting people who do their best to help? We’re talking about marriage, like mine, or any other relationship.

This article aims to bring some light to the following:

• If you’re the one who supports your loved one with endometriosis, this might connect us both at some level. You will mostly be the one who can really understand what I feel.
• If you are the one who suffers from endometriosis, my heart goes out to you! But I need you to know, that this article doesn’t aim to make you feel guilty, but to help you understand what your loved one might be going through, so we can understand each other better.

Loving someone with a chronic illness isn’t different from loving someone without the pain.

I met my wife before her first symptoms started. It took some time for her to be diagnosed. You could circle the world on the boat and my wife’s endometriosis still wouldn’t be discovered.

Although it took her “only” five years to get diagnosed, there are women who take much longer. I personally know a woman who was diagnosed after 20 long years!

There are an estimated 100 million Americans alone who live with chronic pain, so you can only imagine how many there are across the world.

On average it takes between 7 and 8 years to get your first laparoscopy and my M considers herself lucky.

But people seem to forget that for every person who lives with chronic illness, there is an army of those who love that person – whether it’s a spouse, a parent, a child, or a friend.

I can’t imagine what endometriosis feels like, I will never experience that. However, living with the person who suffers may give you some clues.

Many times I tried to imagine how my wife feels but it is impossible to even scratch the surface of that feeling.

For one, I’m not a woman. Secondly, even if I was, I still wouldn’t necessarily know how much pain feels since there is approximately 10 to 14% of women suffer from this brutal disease.

But saying all that I seem to be forgotten along with all other beautiful souls who do their best to support their loved ones.

Naturally, we are not in the eye of attention but we should also be taken into the equation.

Until then, somewhere in the shadows, we will continue to support, love, and cherish our brave endo-warriors.

I would like to invite you to read one of the letters I wrote to my wife, trying to grasp how I felt during one of the million days as her husband when one of her endometriosis flare-ups made her irritable towards me.

To my unbelievable wife…

“When we first met I never thought I would be writing this. We have come a long way over our 13 loving years.

Despite the hardship, we have never given up on each other.

I’ve never been as close to anyone as you. You know my good heart, you also know my faults.

Darling, you are my best ally who has never let me down, you are my best friend who never gave up on loving me, despite my lack of understanding and your daily struggles.

Sometimes I cannot believe how you manage it all. Your illness doesn’t give a monkey how you feel, where you are, and what’s important to you.

Endometriosis just gives you pain and worry on a daily basis. And yet, you’re still here…

You never stop fighting!

You’ve always been full of energy and so outgoing. Today, you consider yourself a burden to me and to your family.

But I’m here to say, that however your life has changed, and however you believe your illness impacts on my life, I see you for who you really are.

Loving, caring, supportive, intelligent, organized, beautiful… the list goes on.

I see the bride who walked towards me in her beautiful, tight, sexy dress, and your tiara shinning in your curly, reddish hair.

Today, writing from the perspective of a husband who likes to consider himself strong and optimistic, it seems like some things have changed.

I may seem sometimes grumpy, moany, or tired. But I feel that way for so many reasons. I travel 4 hours daily to work. It can be tiring. Especially during Covid-19.

I am still the same person you’ve met. It might not seem that way but deep inside I am. An optimist and funny.

These characteristics are still there inside me. I guess I haven’t shown that lately but I was fighting my own little demons.

I cannot compare my life to yours in the slightest but it doesn’t mean that I haven’t struggled. The lockdown gave us a lot to think about.

And when we had nowhere to go, we began to overthink.

But that’s okay. It’s a normal process that most people around the world go through during this pandemic.

The time we’ve spent together during the lockdown cannot be described as amazing. I get that. It was an emotional roller coaster.

But that’s okay. That’s life.

When you reached your lowest period, it was difficult for me to not take personally your statements asking me to divorce you in order for me to be happy.

But I couldn’t simply let you go and I didn’t think or wanted you to work through it on your own.

There was nothing I could do to help your sadness go away. You were on the edge. But you managed to pull yourself out of this dark place.

At that time, I’m sad to say, I really thought I was going to lose you.

But you said something along the lines of “the only reason I’m still alive is that I couldn’t do that to you or mum. I couldn’t kill myself only because I know how much it would hurt you.”

It reassured me to some extent but at the same time made me realize the seriousness of the situation.

In just one sentence you managed to express how much you value me and my happiness, but at the same time, you explained how poorly you thought of yourself.

There is a lot of frustration that comes from not being able to tell you how much each day is brighter with you around.

To try to communicate what I want to say seems impossible to someone whose English is not the first language. It’s truly one of the hardest things I had to do on the spot.

In the beginning, I felt trapped in a cycle of trying to understand your chronic illness. Endometriosis doesn’t only cause pain.

You can’t take painkillers because there is also IBS, acid reflux, and digestion problems that come in the package with this brutal disease.

Anxiety, depression, even OCD are the things that follow. You can’t eat, sleep, be active the way you used to.

You become anemic due to the loss of vitamins (diet) and metals such as Iron (heavy bleeding).

You can’t eat dairy, sugar, gluten, or red meat. You lose your valuable nutrients from the poorer diet, and then on top of that, you bleed every month losing more.

You wanted to punish yourself for the thought that you felt a burden and you self-harmed instead of trying to punish everyone else for the lack of our understanding of your pain.

I realized that I could really lose you!

But you fought so bravely, not once, but multiple times. I don’t think I ever told you but I am so proud of you babe!

I fooled myself by believing that today is a little bit brighter, and even though more than a few years passed since your darkest days, you are not where you want to be.

The other day you shared more tears, and despite taking to your psychotherapist, it is impossible to break the pattern of your OCD, your flare-ups of depression, and your anxiety over the unknown future.

Your health isn’t great. The fact that you look fit and sexy covers up your wounds and pain. You have learned to cover it in a way, that no one can see what you’re thinking or what you are going through.

I, on the other hand, have learned that there will always be days when you feel down. Days when you are not quite yourself.

I know it is all because of your physical illness and pain, not the other way. And, while some days are a struggle, I still try to learn that when you are unhappy, there may not be always a root cause of endometriosis.

There are hundreds of things that impact your mental wellness. Just the other day, you wrote a list of three pages, consisting of just the tip of an iceberg of the things that make your life so much worse.

I have learned that there will always be struggles and that it might not be easy for me to fully understand you.

But it doesn’t mean that I will give up on us. These feelings are human and can’t be avoided. I accept that.

And don’t feel bad. I’m okay.

Life is stressful. People take for granted how easy life they have. Without pain and yet moaning. But if you suffer from endometriosis, it is truly difficult to live day by day.

Sure, I get stressed, sure, I get worried, and sure, I get afraid. But it’s different with you. You have added thousands of other problems.

With you, everything is more intense. The stress, the worry, the fear.

It’s understandable. I’m sorry I don’t always show it.

Some things that give me butterflies of excitement might make you feel nauseous just thinking about it. Whenever we go o holiday, I can fully focus on the appreciation of little things.

The pain of endometriosis doesn’t allow you to focus on anything, let alone notice, appreciate, or enjoy these simple things in life.

You can’t eat in the restaurant anymore without feeling like everyone is looking at you, you feel different, you feel judged.

Having dinner out might not be a big deal for me, but it might leave you up most of the night because you begin to think of all the things that could go wrong.

Knowing all this doesn’t help in any way. I can’t stop your pain or your worry. Sure, I can distract you from it but the problem doesn’t go away.

But darling here’s what I want you to know:

Sometimes I feel powerless.

Sometimes I feel utterly useless. I see the problem and naturally, I want to be able to just say or do the right thing to fix it.

Sometimes I can’t be relaxed and calm for you, no matter how much I try. You know that the majority of the time things don’t affect me.

Sometimes I cover it well. Is it easy? Yes – I can tell you not to worry because I’m okay. And again, the majority of the time I really am okay.

I can tell you everything will be okay. I can tell you to relax. But I know that it’s not as easy as that. Furthermore – my constant optimism annoyed you.

I understand that now. Positivism cannot erase the pain, let alone get rid of endometriosis.

Forgive me when I look grumpy.

I know how I’m supposed to respond to your worries. There should be compassion and patience. It comes naturally for me for the most part.

I know you can’t help but scream your lungs out in order to get rid of your accumulated stress. I know you want to be better.

Occasionally I might snap at you and make things worse. I am the last person to do this. I’m so sorry about that. I do try but I’m not perfect. I’m going to make mistakes. Please remember that.

I need to do things that keep me recharged and I wish you would too.

You rarely do things for yourself, you constantly think of others. But I know that you can’t go for a run, have drinks with friends or go out to a restaurant for lunch.

But what is important for you to know is this – I’m not running away from you, I am not running away from us.

I’m trying to keep myself balanced. To be healthy in body and mind, I really would want you to do the same too.

Sometimes I feel stuck. I can’t really help how you feel. I know you are fed up and tired of this, but you can help me help you.

When I seem like I don’t understand or forget what you have said in the past, I don’t ignore you. I may forget things because I don’t live in pain. I don’t have this constant reminder.

Please talk to me through your triggers. Explain what causes you the most fear or stress. I need you to tell me these things because your world isn’t the same as mine.

But I love you and support you. You can trust me. I am truly honored to be your husband.

I love you!”

Living with chronic pain…

Understanding what it’s like living with chronic pain dramatically affects how you treat someone who lives with it.

This is why it’s so important, for you as a supporter, to learn. No one tells us, however, how difficult this is.

I can’t experience her pain so how could I even comprehend how to explain this to myself, let alone other people, who seek out the same answers.

But my wife tried to explain it to be the best she could, and I have to say, she did a really good job!

Well, I actually attempted to answer this question in my other article, “How to explain endometriosis pain to a guy”?

But how to explain endometriosis pain at all, let alone to a guy or any other man for that matter? This is why I decided to write the other article.

Besides, there is another question I answered, “how to explain endometriosis to your boss”?

All the above questions are answered in this article.

This is one reason why I wanted to write this post – to help those of you who sufferer from endometriosis, learn a bit more about what our lives are like.

To know what we (supporters) feel and what you can do to help us help you better. The last thing we want is to make you feel worse than you already do.

After having a long conversation with my wife who suffers from this invisible and painful illness, I realized how uninformed I was.

Sure, I educated myself along the way, but what struck me the most was the fact, that my wife doesn’t just experience endometriosis pain alone. There are many conditions that go along with this brutal disease:

• IBS
• Acid reflux
• Digestion problems
• Iron deficiency

All of the above along with the pain and the inability to complete simple tasks at times, give my wife anxiety and fear over the unknown.

After her laparoscopy, M developed an infection. She became dehydrated and weak for two weeks since the operation. It really made her worry.

Trying to control her life in order not to get more infections, my wife developed an Obsessive-Compulsive Disorder. OCD meant to be a controlling mechanism but instead, it became her bully.

Now, aside from her Anxiety Disorder, she developed OCD which gave her more anxiety. Luckily she doesn’t suffer from panic attacks anymore as she’s learned to control them.

However, all the above in the long term caused her to have some flare-ups of depression she used to suffer in the past.

For the most part, my wife tells me that she understands me, that she knows how it affects my life.

I know it is extremely hard to focus her mind on me as her husband when she experiences daily pain. But she keeps saying that she understands what I feel.

But does she?

I would like to believe that because in the past she told me to divorce her for that reason.

She told me on two separate occasions that I should divorce her because she doesn’t feel like a woman, like a proper wife, like the person I married.

M even attempted to commit suicide on a few occasions, because she felt guilt over me not living my life to the fullest.

Our social life at one point was absolutely non-existent for 3 years. We haven’t gone out for a drink with anyone but us alone.

We have lost our sex life. It is neither her nor my fault. That’s what endometriosis causes in most cases, a loss of active sex life.

I am not saying that your sex life has to be non-existent, but as I said once in my “invisible illness” article, the words are self-explanatory:

“Her body is a pure fascination for me. I want to embrace it, I want to caress it and even though I´m the only man on earth who has the privilege to touch her, I can’t…

Endometriosis stands in the way. It tries to invade our lives.”

I know that I will never be able to understand her pain and suffering fully because I am not in her shoes, but she will never understand my point of view to the full extent either.

I wanted to describe it the best way I could but it isn’t easy.

As a matter of fact, I even thought of writing a book on the subject, that’s how much there is to be said.

I run the Worry Head blog to speak up for those who can’t and for those who are afraid to. They may be shy or simply want to respect their own privacy. Everyone has a reason and the right to do so.

I, however, chose to speak up! To spread awareness not only about endometriosis, but also mental health that undoubtedly is affected by this brutal disease.

Writing helps me escape from overthinking. I was never such a person. I am naturally physically extremely active at least I used to be, so was my wife.

But the illness made her unable to be as fit as she used to be. The unpredictability of the pain that can appear at any moment makes her unable to plan things ahead.

It must be impossibly hard for her to know that she will have to live like this for the rest of her life. That was my thought ever since her diagnosis. And so I began to think about how to help her.

The best thing would be to be there for her whenever she needs me. Naturally, everyone would do that for their loved ones.

But I think I went beyond that, I did too much!

Sure, I was there for her in the time of need but I also skipped my own needs in order to give her more attention.

I wonder if all the supporters out there feel the same as me and pushed themselves beyond too?

I began not only to spend more time with her to keep her company and make her smile so she doesn’t feel lonely, I skipped doing what I love so much – the gym!

I’m a fitness fanatic. I love doing Olympic Weightlifting and CrossFit.

Since Covid-19, being in the lockdown, additionally stopped us from dancing. We both aim to compete in Latin-Ballroom.

Dance is our passion and what we share the most but the virus pandemic took it away from us for a while. That’s an additional worry.

But this virus wasn’t around here before and yet I still resigned from my hobbies in order to spend time with my wife.

I gave up my gym almost entirely. I used to go 5 days of the week and I cut it down to 1 per week. It really hit me hard after a while.

Every time I felt the need to go, instead, I stayed with my wife ignoring my own needs.

I felt the responsibility for taking care of her and guilt each time I entered or even thought of going to the gym. But why?

Didn’t my feelings matter?

At the time, mistakenly I thought they did not.

But I was wrong. Neglecting my hobbies and needs made me feel grumpy at times and my poor wife noticed that.

Seeing me skipping my workouts made her feel guilty. It didn’t matter it was my choice, my decision.

My wife felt responsible for my life not being fulfilled. Despite telling me that I should continue to do what I want and forget about her, I couldn’t do that.

I felt the responsibility to prioritize her because my wife wasn’t able to do what she used to and I would always have the option of going back to my hobbies. But I didn’t. I kept putting it aside.

I was at times a grumpy git. Don’t get me wrong – not often at all but sporadically, once every two weeks I had a grumpy day.

But I kept it all hidden. It made me feel guilty and responsible, it made my wife guilty and responsible.

Now, in a nutshell – as the supporter, you should do things for yourself, do not neglect your needs. No one is going to judge you. I know you might feel the urge of giving it all, but don’t ignore your own needs.

In the long run, it will make both of you happy.

As if it wasn’t enough, I felt terrible guilt even thinking about writing this article.

You see, I feel guilty writing this because I feel somehow like I am betraying her privacy writing and sufferer wanting to express my thoughts, and help other people along the way to understand the supporter’s point of view.

I never used to be like this. I had an uncomplicated life. But for my wife’s sake, I took it on the cheek. My male pride doesn’t want my ego to be hurt and I should not take this like a wimp.

But I did it for her! Despite her shouting, telling me that I don’t understand her agony and how negatively she feels.

Her anger comes from the pain, her frustrations come from the loss of her old-active-self and from the unknown future.

I don’t know if she does realize at the time how she acts.

Sometimes her pain is so overwhelming she doesn’t realize how strongly she acts towards me.

But despite all these situations, I stay by her side because “No amount of anxiety will push me away…”