Falling in love with someone with a chronic illness. How can you make it work?

Falling in love with a chronic ill person…

When I met my wife in 2008, she was a professional dancer, choreographer, and performer. After her diagnosis of endometriosis, M’s health began to worsen month by month. Falling in love with someone with a chronic illness isn’t for everyone, but it can be more fulfilling than those in healthy relationships.

After being diagnosed with stage IV deep infiltrating endometriosis, my wife developed fibromyalgia disorder.

Surviving a week with one chronic illness is a full-time job, let alone having two chronic conditions. Living with multimorbidity is really challenging, but being a spouse of someone with chronic illness isn’t sunshine and puppy cuddles either.

Our struggles aren’t widely spoken of. The reason being might be the fact that spousal caregivers, especially men, don’t open up about their challenges and emotions.

After a while, we learn how to cope with a chronically ill partner.

We learn how to help our partners physically and emotionally, so they can live a fairly good life. But even though we gain experience and confidence about the future, for those who just met a chronically ill person, is hard to imagine how to build a relationship.

How to cope with falling in love with someone with a chronic illness, and how will it shape your relationship?

Here’s the answer:

• Your spouse is more than their illness!
• Learn about your partner’s illness.
• Expect the unexpected…
• Prepare for the complexity.
• Listen to your partner.
• Speak openly about your emotions.
• Don’t always talk about the illness!

Chronic illness is going to bring more intimacy to your relationship. You’re going to learn more about each other. It’s absolutely possible to live a happy, fulfilling life… even thrive. Blogging is the best way to improve your life!

Your spouse is more than their illness!

Remember that your partner is so much more than their chronic illness. You will find that many people, sometimes even family, are going to judge because they lack in understanding that the invisible illness is real, the pain is real, the symptoms are real.

Just because they cannot see it, it doesn’t mean your partner imagines chronic pain. I always stand up to those who don’t believe my wife. I ask them – “Can you see a toothache? Don’t judge!”

In moments like that, they give me a headache, which by the way they cannot see either. Does it mean it’s not there?

Your partner is more than the symptoms and the illness. Your partner has a past, hobbies, passions, ambitions, and goals, and even though the illness invaded their life, they still have the same hopes and dreams.

Your partner still needs love and intimacy, they need it even more than before.

Don’t let their illness change your mind about them. Your partner is still a person who needs love and understanding as you do.

Always remember that your spouse is NOT their chronic illness or mental illness. It’s okay to say no when they are in a flare or in increased pain. The characteristics of the illness never define who your loved one is! There’s only one of her/him, so remember to be kind and love them.

Learn about your partner’s illness.

Trust me, it will help you immensely! Falling in love with someone with a chronic illness is like a jump into the murky water, you never know what you’re going to find below.

If you learn about your partner’s condition, you’ll find it more clear, and you’ll see what’s beneath the surface.

It was pretty difficult for me as I didn’t know where to start. The reason being was the way my wife was treated by the doctors and family. Only her mum and I believed in her struggles, but her father and brother weren’t so understanding. Furthermore, they did not believe her.

It may be understandable that some family members or friends will not believe your partner’s symptoms since they are invisible.

But if a general practitioner says that it is all in your head, imagine how would you feel…

Long story short, my wife visited doctors countless times over a period of a few years. Only when I stepped in, did they get their act together and change their tune. They began to believe my partner because I (a man) was present.

Unfortunately, women are not treated fairly, especially by male doctors. Their symptoms are being “normalized”, and as it was in my wife’s case, many women are being labeled as mentally ill.

“It’s anxiety dear”, “have you been stressed lately dear”, “period should hurt dear”, “take two of these pills dear, they will help your symptoms”…

Really???

Imagine doctors telling you for years that the pain you experience is in your head. After a while, you believe to think it’s true because doctors meant to know what’s wrong, and you’ve learned to trust them.

If this was true, why does it take doctors on average 7 to 8 years to diagnose 180 million women with endometriosis, and 5 to 6 years to diagnose them with fibromyalgia?

Because they are human, they don’t know it all. They can’t diagnose a person after seeing them 10 minutes twice a month or so, can they, or am I missing something?

Getting to the point – my wife began to believe doctors and thought there is no solution to her invisible, “non-existent” illness.

She didn’t have support from half of her family, she couldn’t trust doctors whose negligence led her to believe it was all in her head. She began to feel suicidal and attempted to take her life on at least 4 occasions. If it wasn’t for my love and support, being in the right place, right time, I would have lost my wife.

I took on a few occasions 2 months of time off work to keep my wife safe and sane. I reassured her that I believed her, and went on a quest to learn what she was going through. My wife being physically, emotionally, and mentally exhausted, was extremely fatigued. She slept a lot.

I had nothing to do being at home. I began extensive research, during which I began to write a book of our story called “No amount of anxiety will push me away”, which is yet to be published…

A year passed by, I came up with the idea of sharing my story. Worry Head was born, I published my first blog posts. Learning about my wife’s chronic conditions helped me understand on a deeper level than anyone could.

My wife suffers today from stage IV deep infiltrating endometriosis, but also from fibromyalgia.

Expect the unexpected…

As you have already learned, long-term real physical symptoms caused by chronic illness, when are left untreated and neglected by doctors, create a variety of mental health problems, including:

• general anxiety
• obsessive-compulsive disorder
• depression

Female issues are often marginalized and women aren’t taken seriously by male doctors, who either don’t understand the illness or simply don’t care to look into their symptoms seriously. The easiest way out for them is to give their patients antidepressants because they honestly don’t believe women.

Women begin to worry about why no one wants to give them answers. They feel cheated, abandoned, and with no hope for the future, which seems very unknown.

This unknown causes them to think about what may happen. And even though they cannot predict the future, women begin to overthink, eventually believing their own thoughts.

There is another form of anxiety – obsessive-compulsive disorder (OCD for short), which is meant to help them believe that they are in control, which allows them to hold on to something. In reality, OCD controls them.

Additionally, grieving over the old life they’ve lost, and knowing that nobody believes their pain, people begin to think as well, and they think long enough that the reality blends with the present.

Falling in love with someone with a chronic illness is taking on board not only the physical part but also emotional and mental.

However, chronic illness requires much greater communication, and that is going to bring much better and deeper intimacy than if you were with a person whose healthy.

Prepare the complexity.

There will be times when your partner has a flare-up and neither of you will ever be able to know when it is going to occur.

It may mean that you have to cancel plans last minute and there will be plenty of people who won’t understand the reason why this happens. Ideally, you’d like to explain to them the reason why, but you will have to prepare yourself for a lack of understanding.

I’ve learned not to get angry, simply ignore them because no matter how much you try, they will never believe you.

The best way to combat ignorance and such a lack of understanding is by raising awareness about the very illness your partner suffers from, and about our own struggles, that are still rarely spoken of.

Depending on the chronic condition your partner suffers from, you may have to think out of the box and go to greater lengths of trying to figure out how to overcome a particular situation. For instance…

If your partner has endometriosis, depending on the stage of the condition, you and your partner may struggle to get sexually intimate, when it comes to penetration.

Why is endometriosis sex painful?

Not only does penetration cause painful sex but also “finishing” through masturbation has such a painful effect. Well, not every woman experiences pain when orgasming, but after the orgasm, they do due to the muscles that are involved in the process.

Painful sex (dyspareunia) is caused by different factors, including stage and the invasiveness of endometriosis, also by indirect contributors like your bladder or pelvic floor dysfunction.

Also, pelvic floor tenderness and painful bladder syndrome are associated with the severity of the pain your partner may experience.

Endometriosis is associated with an increase in nerve bundle density, causing tenderness and pain during sex. These nerve bundles are large, and by surrounding perineurium are easily identifiable.

The nerve bundle density is just one-factor causing pain. There are also other physical factors, such as bladder tenderness, and psychological ones, like depression.

Not only painful sex is the issue when it comes to endometriosis, but it’s also a fertility problem. There is a possibility of your partner not being able to get pregnant naturally, but don’t be alarmed! She can still have a baby if she freezes her eggs.

IVF is the way to go, so when falling in love with someone with a chronic illness that affects sex life and fertility such as endometriosis, as long as you think about it earlier, you shouldn’t have a problem getting pregnant.

This is why it’s important to get educated about endometriosis before it’s too late.

Listen to your partner.

Always listen to your partner because you’re going to learn more from them than from any book or doctor.

The reason being is that even doctors won’t know your partner as well as you.

They may have a health care system in place but what people seem to forget is the fact that every person is an individual and they shouldn’t treat everyone the same way.

Only when I started to honestly listen to my wife without my interruptions, did I understand far more than any article or book I read on the subject.

By listening to your spouse you show how much you care.

Falling in love with someone with a chronic illness may be challenging, but listening to your partner is the basis for communication. Without communication, you will not solve any problems, and as I already stressed, you have to expect the unexpected.

Listening openly and honestly is one of the best ways to avoid the accumulation of emotions and the best way to express yourself.

Listening to your spouse allows them to combat anxiety, even depression in the same way as cognitive behavioral therapy does. You express your concerns and frustrations and the therapist listens to you.

If you won’t listen, your partner is going to feel sad, lonely, and unwanted.

Simply listen.

Speak openly about your emotions.

If you don’t you will fail to deliver because it is simply impossible to go on forever with keeping your emotions deep inside of you.

Everyone has a breaking point. Don’t shy away from expressing how you feel, especially, if you are a man!

Even though you are going to stand by your partner, in order for everything to work, you have to take care of your own needs first, and means expressing them. Not only how you feel, but also what you feel can help you care better.

Given the circumstances, it’s completely normal to feel down, stressed, anxious. To feel sadness, anger, resentment, even depression is normal too.

The best way to deal with anxiety is to identify the root of your worry. To help deal with these emotions, simply openly talk with your partner, a family member, or even a friend. Lastly, you can consider Cognitive Behavioural Therapy.

CBT, commonly called counseling is the best thing to combat any negative emotions.

However, as long you express your feelings, no matter what they are, you are going to deal with your negative emotions.

Knowing that your partner cares about you means so much but it is not the only answer to what you’re going to need.

Just a kind listening ear helps a lot, to get rid of worry, guilt, sadness, even feeling overwhelmed. Believe me, at some point you’ll get to feel all of them.

Caring for someone is can be hard, but falling in love with someone with a chronic illness can be very stressful because it seems impossible to balance work, being a partner, and caregiver at the same time. It causes a lot of stress.

Stress leads to anxiety, depression, and physical demands lead to exhaustion.

To avoid and combat these emotions, you simply need to express them.

Don’t always talk about the illness!

In the beginning, it may seem appropriate to talk about your partner’s illness to show them that you care but after a few months go by, I advise you to slow down with a discussion about the illness all the time.

Sure, it should still be the subject now and then, since there is no cure to chronic illnesses, and you will have to manage it, therefore there’s no better way than discussing the issue, but not all the time.

I’m sure that like my wife, your partner doesn’t want to be associated with the illness, they want to live a fairly normal life and feel like everyone else.

You have to try to provide your loved one with as close as possible to normal life.

Discussing constantly the same subject may make either of you feel frustrated, and works as a constant reminder of what your partner is going through.

The last thing you want is your partner to become obsessed with their illness. Some people even get to the point where overthinking about their illness makes them feel even worse.

You don’t want your partner to be seen as a hypochondriac because people, including doctors, would stop believing your partner’s real symptoms.

A hypochondriac is someone who lives with the fear that they have a serious, but undiagnosed medical condition, even though diagnostic tests show there is nothing wrong with them.

This is what a majority of doctors who fail to diagnose endometriosis and fibromyalgia think.

Not talking constantly about the illness gives both of you time to discuss other things. Make plans, think of something you enjoy, and look forward to something rather than illness.

Your partner is more than an illness, talk about life because you’re no different than other couples.

Your partner did not choose to be ill, you may have chosen to care for an ill person, or maybe you got surprised like I did just after we got married, but whatever happened it happened for a reason.

I found that I became a spousal caregiver for a reason. If I didn’t, I wouldn’t save her life, and I wouldn’t create a blog I’m so proud of, which allows me to help other people, plus make my dream come true – owning a business.

Falling in love with someone with a chronic illness isn’t for everyone, but it’s very rewarding and I am proud of what I achieved so far.

There’s a long way to go but I enjoy helping other people, it started with my wife, now I plan to expand and help millions of people around the world while enjoying the process.

Lastly, I mentioned that blogging is the best way to better both of your lives, here’s what you need to know…

Take care!