By Erin Dunne
Images from the "Suffering the Silence" web campaign that allowed people to publicly share their experience with chronic illness.
When I was younger, one summer my family was visiting my grandparent's lake house in Indiana. The water was low enough my cousins and I were able to walk out to the anchored raft off the edge of the deck without much swimming or with a life vest. On the way back to the deck I felt a sharp pain in my right foot and felt a piercing sensation with every step I took. My grandmother sat me on the deck to find I had stepped on a large shard of a broken bottle and it was lodged in the center of my foot. I remember bawling from the pain as she attempted to take the shard from my foot but after it was out, I only had a small bruise and a scar. The discomfort I felt in this moment was easily seen by my family members because of my expressions and they could physically see what was causing the pain- but it isn't always this easy with an invisible illness. For many people, without physically seeing the direct source of the pain, it is hard to believe that there is any pain at all. Not seeing the discomfort of an individual doesn't mean that they are not sick. It is not seen by the naked eye, so it is easy to assume that a person is healthy or "normal" when in reality, a person could be having a really bad flare day but "they look fine." Something can be seriously wrong inside of you that only you can feel.
“Just because you cannot see the pain another person is dealing with doesn't make it any less real.”
An Invisible Illness is a chronic condition that is not visible to an onlooker. Examples of invisible illnesses include: Digestive disorders, heart conditions, diabetes, lyme disease, mental illness, etc. The symptoms that are often associated with these illnesses can hinder ones ability to enjoy life and be involved in everyday activities they love- which can be very frustrating. Adjustments are often made to meet the needs of their new, often lower, energy levels and limited ability to move. While medication and treatment plans can help greatly with the physical symptoms, the mental game that can occur due to encounters with others, insecurities, and fighting one's own thoughts can contribute to the pain an individual is already in.
There are times where one may be interacting with others and it seems as though they are witnessing insensitive encounters and whispers from those around them. Comments are often made as to why they are often absent to class, work, and social events. Even comments on ones mood- why they are short tempered, withdrawn, or why they lay around so often (maybe even being referred to as lazy). "Laziness" to an invisible illness sufferer can be just as important as any medication or treatment they are taking to help their symptoms because it is helping their body recover from the havoc that is wreaking within. When explaining how they are feeling to others, it is common to be countered with the comment "but you look so good." Further fueling the idea that capability is based on the way a person looks. All of these small contributions can lead the individual with the illness to question themselves and often look down on their recovery. There have been times I have felt bad for having to cancel plans for being sick- I feel as though I let others down, or I have gotten mad at myself for not being well enough to go about daily activities. There are times I compare myself to others that are in good health and think of when I was able to do similar things but I become upset with the fact that I am unable to do those things currently. While it is easy to automatically go to these negative places, they truly don't help with recovery so what is the point? Focusing on so and so's good health won't make my symptoms any better so why am I wasting my energy on being jealous? It is best to focus on yourself and your needs in the current moment.
These illnesses can only be experienced and felt by the individual that has them- we can try to describe our discomfort to others but it is hardly ever satisfactory. Each day can look different for various people because each person has different degrees of productivity that is possible for them. For me, on a good day I am refreshed from a good nights sleep, am able to eat at every meal and even snack in between, get some form of exercise, and have concentration throughout the day that allows me to get tasks like errands and homework done. Other days I may only be able to do a fraction of these things and witness extreme brain fog that makes concentration close to impossible. There are times where I have multiple productive days in a row or I have low energy days that I often become frustrated with. One of the biggest lessons that I have learned through the years is to give myself grace on the days that I may not be able to get done what I had originally planned.
As I have mentioned before, I am a big advocate of listening to our bodies- it knows much quicker then us if it has been overworked and needs to recover. Giving yourself grace and being kind to your body is key with any invisible illness because we too cannot see what is physically causing us pain. Sometimes we do not even know of what event or substance caused the discomfort but we experience it. If you had things planned for the day and you wake up and don't feel as though you can complete everything, that is OKAY! Do what you think you can handle and be easy on yourself. Move as much as you can throughout the day, be gentle on your gut and nourish your body with foods that you know work best for you, and do something that makes you happy! You know yourself and your healing abilities better than anyone else so you must do what you can to honor your body in times where it may need more attention. It's okay if others do not completely understand or are able to empathize to the degree you wish they could, but it is important that they are as understanding and supportive as they can be. Although it may feel like it at times, there are others in similar situations that understand the isolation that comes with invisible illnesses. It is important to acknowledge that you are never alone in your journey, even in moments where it seems as though you are.
People could say to those without invisible illnesses that they are lucky they don't have to deal with a disorder. And while I would never wish an illness on anybody, I don't necessarily agree that I am less lucky I have to live with an invisible illness. Are there some days I wish I had never been diagnosed with Crohn's Disease? Absolutely- but those are typically the days that I have become so fixed on the negative that I forget to acknowledge the positives that have come out of my diagnosis. There is always room for growth and I believe that having Crohn's has allowed me to grow remarkably into a person that empathizes for others, I wish to care for and help others because I understand the pain and loneliness that can be felt amidst illness, and I have been able to be a part of a wonderful IBD community. On a more personal level, I have found a love for cooking as I have had to alter my diet to fit my bodies needs, I am more in tune with my body and mind, I understand how to handle low energy/ mentally challenging days, and I give myself grace more than ever before. Yes there are times where it is very hard to handle the insecurity that others don't understand and may judge because they may think I am lying about my pain, but I know myself more than anyone and if I feel the pain, I know it is real- I don't need to validate that to anyone else.
There are many highs and lows of having an invisible illness but I think it is very important to try to find as many highs as possible to make the lows not seem as bad, but also to learn how to handle the low moments better. Life is happening for us, not to us and looking at these illnesses as opportunities for growth can help our perspective towards them remain as positive as possible.
Stay Lovely,
Erin D.