Today I want to share a guest post written by Alexa from Girl in Healing! In this post Alexa will share some of the many challenges of living with an invisible illness in every day life.
Let’s turn it over to Alexa!
5 Everyday Challenges of Living with an Invisible Illness
1) You Don’t Look Sick
Invisible illnesses are exactly that. Invisible. This can be a double-edged sword. Of course, no one wants to appear sick, but looking like a healthy human being when your body is waging war on itself on the inside poses some challenges.
This is true when it comes to explaining your illness to someone who is unfamiliar with it. Often people will say, “But, you don’t look sick.” If only they could feel what is going on inside!
I have been lucky and have not experienced any true horror stories in this regard, but I know that many people experience it daily. Because of the invisibility factor, I sometimes fear that people don’t believe me. If I cancel plans or cannot commit to an activity in advance I sometimes wonder, “Do they think I’m making this up?”
No one with an invisible illness should be worrying about that, especially on top of the pain that’s already there! When I am in that mindset I just tell myself that I need to do what is best for me.
Living with an invisible illness means leaning on friends and family for support. I know I would not be able to get through the rough patches without my solid support system. I am truly blessed to have such understanding people in my life. When it comes to relying on them during those times, guilt can surely set in. My family knows how much my symptoms can impact me, and they are always ready to prepare me meals and comfort me in anyway they can. As a young adult still living at home, my parents still cover many expenses, including some medical appointments and supplements from doctors that are not covered by insurance.
Who wants to be a physical, emotional, and financial drain?!
And then there can be guilt when invisible illnesses become too much to keep commitments. Sometimes I have to cancel plans with my friends. That’s always a tough call. It’s hard enough to plan a day and time that works for everyone to meet up and I hate to be the one to break that up.
Some days (mainly during flare-ups, but also randomly) I experience extreme fatigue. In my case, I nicknamed it, “Crohn’s Fatigue,” but it is a symptom common among other invisible illnesses. The only way I can explain it is that on those days I can barely lift my head from my pillow. Forget working, forget cooking, cleaning, or driving. On those days, my only goal is to rest.
These times can take a toll on self-esteem. Sure, lazy days are nice once in a while. But when you are stuck in bed against your will it is easy to feel down.
4) Eating On-The-Go
Not everyone with an invisible illness adjusts his/her diet, but living with one that is rooted in the gastrointestinal tract, you bet I do! Eating at home (and at purposefully chosen restaurants) is not hard. In fact, I have come to love exploring different foods and recipes (hence the creation of my blog!). I have educated myself immensely on our food system and I am completely certain that being diagnosed with Crohn’s led me to this healthier lifestyle.
The obstacle arises when I am away from home longer than I thought and therefore, unprepared. You can ask my family, I am one ugly hangry mess when I have not eaten. If I am out without safe options to eat I either go without (and my energy takes a huge dip) or I “cheat” and may pay for it later. It’s not as simple as going to the nearest drive-through.
5) Flares are Unexpected
Invisible illnesses can flare-up, which means an elongated period of time experiencing symptoms. There are certainly things that can be done to minimize flare-ups, but unfortunately, they cannot always be prevented.
When a flare-up strikes, a person’s health can decline very quickly. In the past, it has taken me mere days to endure weight loss, dehydration and a host of other uncomfortable symptoms.
The unpredictable nature of invisible illnesses goes back to the fatigue, guilt and not appearing sick. A person could appear normally at work one day and a few days later need to take a leave of absence to deal with the illness.
It is a challenge to be living a fulfilling life and then have to accept that it is taken away, even temporarily.
If you know someone with invisible illness, it’s important to keep these obstacles in mind so you can best support him/her. Even when you don’t know how to help, lending an ear or a few words of encouragement can mean the world!
Alexa Federico is a 22-year-old born and raised just north of Boston, Massachusetts. She is an avid reader and green tea drinker. She blogs at Girl in Healing, where she creates healthy recipes and shares her life experiences living with Crohn’s disease, a form of Inflammatory Bowel Disease (IBD), which there is currently no cure for. She is a firm believer that “food is medicine,” after seeing extraordinary improvements in her health from following a modified Paleo diet. You can follow Alexa on Facebook, Instagram, Twitter, and Pinterest.