Having a chronic disease like IBD can be extremely isolating. Symptoms, fear, and embarrassment may make us feel excluded from some social interactions. Unfortunately loneliness and IBD often go hand and hand.
I have personally experienced loneliness that can be attributed to having IBD. Over the years, I believe that this loneliness has gotten worse. But I have also learnt some tricks for managing loneliness better.
We will discuss
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Why IBD can be isolating
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IBD and mental health
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Tips for dealing with loneliness and IBD
Why IBD Can Cause Loneliness
There are so many reasons why you may feel isolated from others if you have a chronic disease. I have personally felt that other people cannot truly understand what is going on in my life.
Such a huge part of my life surrounds managing my IBD. I don’t have any friends who have IBD, so it can feel like the people I know do not understand such a large aspect of my life. This in itself can be isolating. It can feel as if others do not, and cannot understand such a huge aspect of my life.
Reports have shown that depression is higher among IBD patients, than controls. This is often attributed to increases in disease in activity, and embarrassment around the disease.
IBD can also be isolating because of the symptoms. You may feel uncomfortable going to an event. Where will the toilets be? What type of food will be served? How will I feel when everyone else is drinking alcohol, and I can only drink water?
There are also many symptoms of IBD that may make us feel loneliness. Fatigue is probably one of the most prevalent. I have a very physical job. On my days off, it can often take me more than one full day to recover. I do not feel like I have the energy to go for a hike with friends. Or even stand up to play pool at a friend’s place. I feel like I often have to sit on the side lines of activities, due to fatigue.
I have even experienced fears of socializing because of my thinning hair. How will I look under the light at a friend’s house? Or how can I wear a hat to the restaurant at nighttime?
I have also felt very isolated because I am currently getting most of my calories from meal replacement shakes. How can I invite people over for dinner, if I do not eat dinner? Will other people not want to invite me over, if I cannot participate in a meal?
I have also felt that managing IBD can take up so much of my mental space. So much so that sometimes, I don’t have the mental capacity to handle social interactions.
Sometimes the mental load of having IBD can be too much to handle, and I need to just be alone.
Many patients with IBD know how this disease can affect our mental health. One study found that IBD patients are nine times more likely to suffer from depression, than the general population. This is thought to be due to poor gut microbiome health. And increase of inflammation in the body, that may actually affect the brain and cause depression.
We can also tend to have health anxiety. This anxiety itself can increase loneliness. It can make it overwhelming to make plans far from home. It can also be so distracting that you do not even have interest in socializing.
These mental health issues can cause further isolation, and loneliness. Anyone who has suffered from depression, knows that this debilitating mental disease can make it difficult to socialize.
Tips for Dealing with Loneliness and IBD
There are definitely a few steps that we can take to help with loneliness and IBD.
Firstly, take it easy on yourself. You do not need to go to every social event. Or participate in every activity. Sometimes sitting on the sidelines is perfectly acceptable.
Try inviting friends over to your place. This way you can be comfortable with the toilet situation. You can control the foods that are being served. And you will always have a comfortable place to sit.
If you are invited out, I have found it best to go early, and leave early. This ensures that you can still get enough sleep. And that you may miss the worst of the drunken debauchery.
Making a friend who also has IBD could be very liberating. Try connecting with others using Facebook groups. Or posting on a community forum. Or join a local support group.
Realizing how your mental health can affect your loneliness levels, may also help. Knowing that patients with IBD are more likely to suffer from depression, and health anxiety can be beneficial. It can explain why sometimes you may feel more down.
It could make it easier to separate what could be depressive thoughts, from reality.
Being open with your friends and family about your situation will also be helpful. If those around you understand what you are going through, or some things may be more difficult for you. You may find it easier to participate in activities with these friends. And they are more likely to be supportive and helpful.
Another beneficial tip can be to find the balance between pushing yourself, and taking it easy. Push yourself to socialize, but also give yourself rest when you need it. You are the only one who can feel your own body. And make these decisions for yourself.
Managing feelings of loneliness and IBD can be overwhelming. But knowing what is going on inside your body. And knowing that others with IBD may also have the same experiences can be beneficial.
You are not alone. There are others out there with IBD who may have similar experiences to you.
Remember to always listen to your body, and try to enjoy your life as much as you can!