Managing Your Social Life When Your Spouse Has An Invisible Illness

A fulfilling social life is important for everyone, especially concerning marriages and relationships. Things hit a bit differently when trying to manage your social life when your spouse has an invisible illness. Here are some ways to make it easier for you.

What Is an Invisible Illness?

An invisible illness (or disability) is a “physical, mental or neurological condition that is not visible from the outside, yet can limit or challenge a person’s movements, senses, or activities” that brings on more challenges because the person does not look how they feel.

People with invisible illnesses must work harder to meet the same societal standards and complete typical daily tasks as those who are not chronically ill. It can be confusing and surprising for others when they mention not feeling well enough to do things, and unfortunately their symptoms are often minimized by responses like “you don’t look sick.” 

Those responses can be emotionally damaging and hurtful, sometimes leading the person to feel guilty, ignored and misunderstood. In turn, thoughts often come up like, “How do I get other people to take my health seriously?” or “Am I overreacting?” Understanding the experience of your spouse with an invisible illness allows you truly see them for who they are and help them feel supported.

How Does This Affect Your Social Life?

Your spouse’s health condition becomes a family health condition, requiring you to make some adjustments as well. There is a strong possibility that the social habits and opportunities that you had prior to diagnosis have changed. The time spent supporting your spouse when they do not feel well enough to do things sometimes brings on a wave of emotions because you miss how things used to be.

At some point you just want to get out of your “new norm” and do some things differently, including spending time with friends or loved ones without having to think about anything else. That doesn’t make you a bad person. It just means that you are human. 

Here are some common issues that interfere with your social life when your spouse has an invisible chronic illness.

#1. Feelings of Guilt

Have you ever felt guilty going out on the town or just going out for coffee while your loved one is home not feeling well? You have concerns that you are not doing enough or are abandoning them for having fun for yourself. Although these feelings are normal, it’s not necessarily true. 

Take a moment to consider how you actually support your spouse throughout the week. If you can honestly say you invested time with them to make life easier, then the feelings you have are untrue… and you don’t deserve that pressure. Instead, remind yourself of how you are further helping your spouse by intentionally meeting your social needs. 

#2. The Need to Cancel Plans

Social plans are commonly canceled when you or your chronically ill spouse is unexpectedly not feeling well enough to participate. Honestly, knowing that your spouse’s health status can change at the drop of a dime is to be expected, but it’s completely normal to feel blindsided when it happens.

Many people feel disappointed and frustrated when they need to cancel for a few reasons: 1) You already paid for the plans and can’t get the money back, 2) you are concerned that others will be upset when canceling, 3) you are tired of this happening and 4) you really need some time to have fun. Whatever your reasons are for feeling this way, know there’s nothing wrong with that. 

If you notice that your ideal social plans do not allow your chronically ill spouse to be supported, this is a good time to consider how you can meet in the middle and do both. You don’t have to give up your social life and miss out on everything going on, but it will require some compromise and mental adjustments on your part to make it happen.

#3. Busy Schedule

Life with a chronically ill spouse is often busy with balancing work, doctor’s appointments and other personal needs. You can easily become overwhelmed in the day-to-day process of it all and not make the time for fun. Take a look at your schedule and see where you can carve out time for yourself (even if it’s just an hour). That hour can be filled with something that brings you joy (i.e., meeting a friend for lunch or coffee, taking a walk, catching up on a show with a friend). Intentionality is important here.

#4. Lost Contact with Friends

One of the hardest things to cope with when living with an invisible illness is feeling a loss of connection to friends. Both you and your spouse are likely experiencing this and want it to change. This can make you feel alone, forgotten about and that people don’t care. Although it’s normal to develop a smaller circle in these situations, you don’t have to go through life in isolation. 

Talk with your friends and loved ones about how things are going and request how they can help (i.e., check-in phone call or text, virtual call, brief visit at your home, etc). The people who are open to meeting your requests are essential to helping you feel less isolated and more socially engaged.

The Importance of Managing Your Social Life

Your social life is important for you and your spouse’s mental health. In your case, you are wearing many hats, and it is hard to juggle both. It would benefit you and your spouse for you to have a system that allows the both of you to socialize and enjoy yourself.

Here are some benefits of managing your social life:

1. Improved mood (happier, more motivated)
2. Feeling more connected with others
3. Less stress
4. Clearer thoughts
5. Improved ability to sleep
6. More organized (work/life balance)
7. More emotional support
8. Increased gratitude for time with spouse
9. Better relationship with your spouse

Grieve the Past/Future & Embrace the Present

As mentioned earlier, your spouse’s invisible illness requires that some things change (some changes large and some small). Here’s what makes it even harder… Many of your spouse’s symptoms are invisible, so it’s not as easy to notice when changes are happening. From cognitive impairment, increased fatigue, to physical challenges, you may look up and notice that your life and your spouse look different than you remember.

Even though you love and want to help your spouse, let’s face it – change is freaking hard and scary! You have permission to miss parts of your life that were different before all of this happened. Allow yourself to grieve the past and the future you had planned when those moments come up. A therapist can also help you in this process.

Communicate with Your Spouse

Consider some ways that your chronically ill spouse can help relieve your stress by talking things through. It can be easy to make decisions based on fear or assumptions that the worst thing can happen (without talking with your spouse). However a conversation can confirm what they actually need and help you determine how to move forward in certain situations. 

Looking for other ways to relieve your stress? Check out my other blog on how to cope with a chronically ill spouse.

Considerations for Making Social Plans

Here are some things to consider when making social plans for yourself:

1. How often during the week does my spouse typically feel this way?
2. Is my spouse having a flare?
3. What kind of assistance do they need to manage their chronic illness?
4. Will my social plans cause their needs to go unmet?
5. What are some things that will bring me joy?
6. How often do I need to do these things to feel refreshed and connected?
7. What other things can I do if I need to cancel these plans for any reason?

It can help to have a back-up plan or have a discussion with your friends so they understand this could happen. You’d be surprised that your friends may be supportive and be willing to adjust as needed to spend more time with you.

Next Steps for Chronic Illness Management

I help individuals and families who are living with anxiety, chronic illnesses and the emotional toll that it can bring. We can talk through your personal experiences as a caregiver, build more supports and help you cope with life as you support your chronically ill spouse. 

Although you cannot control certain aspects of your spouse’s illness, your mindset and intentional response to your own physical and mental health are big steps for feeling more prepared. It can also help you support them with more confidence.

You can schedule your first appointment with me by booking a free 15-minute consultation call.