How chronic illness affects relationships? From a caring husbsnd’s perspective…

How chronic illness affects relationships?

As a husband behind my chronically ill wife, I found myself trapped on countless occasions in the past not knowing what to do and how to help. There is no simple answer to the question of how chronic illness affects relationships?

I’ve been in my current relationship with my wife for over 13 years now, and despite her multiple chronic illnesses, I cannot say that I love her any less than before she was diagnosed with endometriosis and fibromyalgia.

In the beginning, I did not understand what she was going through, and frankly, I never will!

Some men get fibromyalgia so it’s possible to get some insight from their point of view by talking to them man to man. But how do you explain endometriosis to a guy? Exactly! I’m not a woman, I’ll never understand, no matter how much I tried.

That brings me to a crucial point – how chronic illness affects relationships if you cannot understand someone else’s illness yourself?

Yeah! I hit the wall! That was the worst part, which caused us a lot of disagreements. I couldn’t understand what M was truly going through, but at the same time, she didn’t understand my struggles.

But as time passed by, M realized that I love her for being who she really is, instead of feeling that she needs to put on a show to please me. She hid her emotions, which led her to feel suicidal.

Endometriosis and fibromyalgia impacted my wife’s mental health. She developed anxiety, OCD, severe panic attacks, and depression that almost cost her life on multiple occasions.

So, in a nutshell… how chronic illness affects relationships?

Happy couples are those that can adapt to any challenges of life. Even for couples without the added challenge of chronic illness life can be difficult. Take for instance children, job changes, bills, etc…

Adding to it chronic illness, or worse – multiple chronic illnesses, like it is in my wife’s case, life seems impossible to the person who suffers. This is where a supportive partner comes in handy!

I said many times that “the best gift you can ever give to a chronically ill partner is your unconditional love and support”.

Because you cannot go through such challenging life alone. Dealing with daily pain, fatigue, brain fog, not being able to accomplish simple daily chores and tasks is a full-time job!

Let’s take a look in a nutshell at 17 ways on how chronic illness can affect both of you, and then we’ll explain it in more detail…

Here’s how chronic illness affects relationships from the point of view of those who suffer from chronic illness:

• Their health can fluctuate dramatically and despite your best efforts as the caregiver, you feel helpless!
• They feel like a burden to you and their family, oftentimes it leads them to depression and suicidal thoughts.
• It’s impossible to grasp how this affects the caregiving partner.
• They may feel that no one, including you, can really understand them because you’re not chronically ill.
• They cannot plan things ahead because the pain flare-up or fatigue can appear at any time ruin their plans.
• Chronic illness has an impact on diet and sleep.

Here’s how chronic illness affects relationships from your perspective as the caregiver:

• You may be struggling to adapt to the new responsibilities that you’re required to undertake.
• You feel like your feelings aren’t taken seriously and you feel forgotten.
• Bottling up your own emotions is making you extremely unhappy.
• You stop taking care of yourself, focusing entirely on your chronically loved one. That may lead to caregiver burnout!
• You may often take time off work for your spouse when they need you most, which impacts your income.
• Your constant efforts may not be noticed or/and appreciated.

Here’s how chronic illness affects you both as a couple:

• Chronic illness and all the associated stress and anxiety is usually an exhausting business for everyone involved.
• Chronic pain, especially endometriosis pain, affects your sexual life and intimacy.
• In a long run, chronic illness impacts your financial situation.
• Chronic pain has a significant impact on your social relationships as a couple.

When you are a professional caregiver, your job may last a few hours at a time.

However, when you care for a chronically ill loved one, the demands of caregiving are completely different and often can be really exhausting, and overwhelming.

But there are steps you can take to rein in stress and regain a sense of balance, joy, and hope in your life.

The point of view of the sufferer:

How chronic illness affects relationships from the point of view of those who suffer?

Your loved one’s health can fluctuate dramatically despite your best efforts. But neither of you can predict when the next pain flare-up is going to appear. My wife roughly knows that her endometriosis flare-up comes during ovulation and during her period.

She cannot predict however when the pain from fibromyalgia will reappear. All we know is that aside from the diet (sugar, dairy, gluten) stress is the biggest trigger.

But again, she cannot predict what and when will trigger her stress itself.

Loving someone struggling with chronic pain can often feel helpless because we rarely know the answer to when chronic pain will strike again. The very unknown is the worst. You feel like you are always caught off guard.

Chronic pain not only affects the individual who suffers from them, but they also have a knock-on effect on those who support them.

We found that stress is a major factor. Even though you cannot avoid overall stressful situations in life, you can avoid the triggers that you definitely know cause stress. It may be a crowded train, public speaking, certain people, etc…

Your partner may feel like a burden. One of my wife’s constant fears is becoming a burden to me and others. I’m sure my M isn’t alone in feeling this way and your partner may feel the same way, even though she/he won’t tell you.

I think nearly everyone with a chronic illness feels the same way from time to time.

My response to it is always “you are not a burden darling! I will do anything for you, you just have to ask. Besides, if you were a burden to me I would be a long time gone. But I’m here. You’re not a burden, you suffer.”

My wife asked me on three occasions to divorce her, a few times she wanted to take her own life. All that to give me a break, to let me go and live my life fully because she felt like she stopped me from being happy.

This is why chronic illness may have a very destructive impact on any relationship.

It’s impossible for those who suffer to grasp how this affects the caregiving partner because oftentimes they are in too much physical, emotional, and mental pain.

I don’t blame them!

Changes often bring loss to your loved one suffering from chronic illness, and even though this changes you too, your hobbies and passions become less valuable, they are not as important anymore as your partner’s wellbeing, and even though it seems easy to cope at the beginning, eventually it catches up with both of you.

Your partner is too focused on her/his struggles and doesn’t notice yours.

This can be hard to take, but most caregivers keep it for themselves (including me) not to hurt your partner’s feelings thinking they have enough on their plate to deal with.

Your partner may feel that no one, including you, can really understand them because you’re not chronically ill.

This can be hurtful because you try so hard to please them, but I would agree with that statement because I don’t suffer from chronic illness and pain myself, and I will never fully understand what my wife is going through, despite my best efforts.

When it comes to endometriosis, I will never understand fully what she’s going through, after all, I’m not a woman.

Sometimes she talks to her mum because I’m a man. Even though I’m a loving, supportive husband, she finds more support in her mum with her female issues that is endometriosis brings.

When your loved one cannot plan things ahead because the pain flare-up or fatigue can appear at any time ruin their plans, it can be very disappointing not only for her but also friends and other people who expect us to be reliable.

It can be frustrating at times because they don’t understand how chronic illness impacts one’s life.

Plans are often canceled last minute, and that can ruin friendships.

Aside from that, chronic pain, fatigue, or emotional burden leaves your partner not able to work, and additionally, affects your job. Nevertheless, I always chose her well-being over my job. My boss is very understanding, I count myself lucky!

Chronic illness has an impact on your partner’s diet and sleep. The diet for endometriosis is similar to the one for fibromyalgia. Cutting certain things from your diet to help ease your symptoms and pain. These include:

• refined sugar
• caffeine
• alcohol
• fried foods
• red meat
• diary
• highly processed
• foods

My wife is Italian, excluding coffee completely is not an option! But I’ll have you know, that coffee doesn’t really have much impact as long as you have one in the morning, and like my wife, you have only one shot.

This way, you don’t erase coffee from your life, enjoy its beautiful flavor, and on a good day you might squeeze in another one afternoon. Using my wife’s idea of having one shot at a time, if you have two a day, it’s really one regular coffee which usually has two shots.

And what about sleep? Sleep is often impacted by chronic pain, restlessness, anxiety, IBS, and often acid reflux problems.

Naturally, your partner’s broken sleep affects yours. You are there for your loved ones and you come to their aid. This is especially true for my wife’s anxiety which often cost me precious hours of sleep at the time.

The point of view of caregiver…

Now, moving on to how chronic illness affects relationships from your perspective as the caregiver:

You may be struggling to adapt to the new responsibilities that you’re required to undertake. Yes. You become your partner’s advocate, nurse, chef, cleaner, shopper, best friend, lover, therapist, pharmacist, and more…

Undoubtedly, this affects your own life. You grieve over your life, but you keep going. You don’t give up.

You should know, that having a chronically ill partner will feel like a loss of your old self, which means that your relationship will be impacted in one way or another by your loved one’s illnesses. It may feel like there is a third person in your relationship.

You feel like your feelings aren’t taken seriously and often you feel forgotten. This is one of the major reasons I decided to create Worry Head. To spread awareness of the unspoken struggles of caregivers.

I am speaking of the crisis that affects once emotionally healthy loved spouses of those who suffer. Because we devote almost every waking hour of our lives (and also the nights) to caring for the person we love.

There are countless blogs from the perspective of those who suffer, but I feel like there is a handful about those who care.

The combination of loss, prolonged stress, and the physical demands of caregiving are widely unspoken.

Regardless of age, sex, race, and ethnicity, caregivers notice similar effects of partner’s chronic illness, such as:

• Sleep deprivation
• Poor eating habits
• Failure to exercise
• Failure to stay in bed when ill
• Postponement of or failure to make medical appointments for themselves

Your emotions!

You may be like me, and bottling up your own emotions is making you extremely unhappy. I struggled in the past with that but eventually realized, that the best solution to it was to take care of my own needs.

I’m a gym-goer, I also dance. We used to dance and performed professionally with my wife in the past, but M’s illness stripped her from dancing for a few years. She’s lost her dance business and gave it up as a full-time job.

I stopped going to the gym and stopped dancing. It made me extremely unhappy, and as a result, my wife noticed that, which made her unhappy too!

But we discussed things over and found the solution. She bought me weights I can use at home, gradually, we began to dance again whenever she has a good day, I also blog – and that my friend is the best thing that ever happened to me. I love it! Her illnesses made me find my purpose again.

You stop taking care of yourself, focusing entirely on your chronically loved one. That may lead to caregiver burnout!

Caregiver burnout is a state of physical, emotional, and mental exhaustion. It may be accompanied by a change in attitude, from positive and caring to negative and unconcerned.

Burnout can occur when you don’t ask for or get the help they need, or even if you try to do more than you are able to do, physically or financially.

You want to avoid that at all costs. Seek help when you feel the need.

You may often take time off work for your spouse when they need you most, which impacts your income. This one is hard but very important.

As I mentioned before, when my wife is in need, I take time off work to take care of her. The fact that my employer is very understanding, I don’t get paid when I’m off work and often we dip into our savings.

My wife’s illnesses stripped her of a full-time job. Today she works part-time, and every time I take time off work, impacts our finances. Sure, we have savings, but the feeling of her guilt over my absence of work remains.

This is where the idea of making some income from blogging can be a great benefit!

At the moment I work full time, I blog whenever I find free time during the day. Mostly during my 1,5-hour travel to work on the train, but always I spend late evenings and early nights for 2-3 hours at the time.

I sincerely hope that my hard work on the side will begin to bring money soon, so I can spend more time taking care of my chronically ill wife and that will make us feel better about our financial future.

Your constant efforts may not be noticed or/and appreciated. That is very common. We spend so much time taking care of our partners, it becomes a norm, a habit, and our caregiving efforts go often unnoticed.

But when they are noticed, it fills us with joy!

After all, we don’t do it for being appreciated, our efforts come from love and pure care.

I don’t expect to hear thank you, but when I do, it gives me strength, it gives me the motivation to keep going.

How it affects you both?

How chronic illness affects both of you as a couple?

Chronic illness and all the associated stress and anxiety is usually an exhausting business for everyone involved. As I said, it impacts sleep patterns for both of you. You feel tired and less focused during the day.

It impacts you financially and socially. You aren’t invited as often as you wish by your friends who may forget you, or get fed u with you not being reliable, despite it not being either of your faults.

Chronic pain, especially endometriosis pain, affects your sexual life and intimacy. You may go for weeks, months, sometimes years without sex.

Her fear of pain or your fear of hurting your partner makes you both too careful to even try. But delaying having a go doesn’t help the situation. Remember – sex isn’t always about penetration. Explore and have fun kids! Wink, wink!

Conclusions…

And that’s about it! I hope you found this article helpful and it gave you some insight on the subject of how chronic illness affects relationships?

You will find your way out of struggles, as long as you communicate. Be open with one another. An honest conversation always leads to finding a solution.

I can assure you that your love and intimacy will grow.

Try to use more empathy in your dialogue. Use ‘I’ language during arguments, don’t blame your partner. Caregiver – make a change in your own behavior rather than trying to “fix” your partner’s health. You can’t!

Be vulnerable yet fearless, and remember, it’s a continuous process, keep in mind that the learning never stops.

All the best!