Invisible illnesses, or invisible disabilities, are all around us and many of us have been suffering from them. In this blog, I discuss what invisible illnesses are, how invisible illnesses can affect us, and my own personal experience with invisible illnesses.
What is an Invisible Disability
To put it simply, an invisible disability is any medical condition, physical or mental, which isn’t visible to others. Invisible illness is an umbrella term for a wide range of syndromes, diseases, and conditions. Some of these illnesses are physical such as fibromyalgia, irritable bowel syndrome, arthritis, and many many more. Other invisible illnesses are mental such as anxiety, panic, depression, and many more.
How an Invisible Illness Can Affect Us
Any illness comes with struggles. Invisible illnesses, however, often come with a common struggle – getting people to understand or believe that you are suffering. You seriously wouldn’t think it would be that hard, but unless you suffer from an invisible illness or know someone with an invisible illness, you’d be surprised by how many people doubt you. This doubt can make the struggle a lot harder and affect your mental health.
People with invisible illnesses have probably heard that it’s all in their head, they’re in control of their suffering, and/or they may come face-to-face with someone who straight-up says they don’t believe they’re sick because they look fine. It’s disheartening to deal with this criticism simply because you can’t show physical symptoms of what you’re experiencing. Others’ closed-off beliefs and decisions to stick to what they only understand rather than choose to learn can be very damaging. It takes a lot of strength to develop the ability to accept that not everyone will be supportive, believing, and kind about your illness.
My Experience with Invisible Illnesses
I have quite a few invisible illnesses all mixed up which often causes an invisible illness party in my mind and body where the one who always has to clean it up is me. I’m not going to talk about all of my illnesses, but I want to discuss an experience I had to shine some light how hurtful it can be when others doubt a person’s suffering.
In my early 20s, I was diagnosed with my first two physical invisible illness, fibromyalgia and irritable bowel syndrome. During this time I worked at a bank as a teller with two other girls. I had been working this job for over a year before illnesses hit. When I was first diagnosed, I was having serious issues handling all the changes that were happening to my body. I was tired all the time, I was achey, I couldn’t do the physical things that I could do before, I couldn’t eat without my stomach hurting, and I was freaked out by all of it. These diagnoses came after a rather rough time with a few infections that I had. Because of that, it felt like I had woken up one day with these new illnesses and I was struggling to get back to my old life.
I came into work but would often feel sick to my stomach and need to leave or would often feel unwell enough that I couldn’t go into work at all. I got to the point where I stopped eating before and during work because I knew that food more often than not hurt my stomach. At the time I hadn’t found a diet that worked for me so almost everything I ate made me feel sick. I had coworkers relying on me to be at work and I was feeling a lot of pressure to make that happen, to the point where I would be skipping breakfast and lunch just to make sure that I had a chance of staying at work. I would bring a small bag of corn flakes or crackers, and snack on them throughout the day since not eating also could make me feel sick. Needless to say, I lost weight quickly dropping to almost 100 pounds.
While I was struggling to piece myself back together and find a good balance with my new illnesses, I was dealing with harsh realities at work. One of the girls I worked with, let’s call her Rita, suddenly became rude to me, saying snide and passive aggressive comments to me, and straight up ignoring me. Some of the comments she said were about my illnesses and others were just about me in general. I was already being driven crazy by myself, pushing myself as hard as I could to get back to the life I had even if it included starving myself to get there. Add a co-worker who clearly didn’t like me anymore since being sick and who I worked with every single day, it was one of the toughest times of my life. I tried talking to my coworker and even had to file a complaint to my supervisor because her rude comments began to get out of hand and her ignoring me began to interfere with our jobs. My manager spoke with her, but nothing changed unfortunately.
The other teller, Veronica, was friends with both Rita and me. I kept her out of the situation until one day it became too much for me. I confided in her and told her I had no idea what to do or how to fix it. She listened and said that I needed to understand where she and Rita were both coming from. It was extremely frustrating for them that I was sick all the time and missing work especially when I didn’t look sick.
Hearing that Veronica felt the same way as Rita was the final blow for me. As I stood in the teller window with my little bag of corn flakes and my pants that were barely hanging on to me, I realized just how toxic of a situation I was in. I was physically harming myself to try to get my old life back, to try to not let my coworkers down, all while hoping that my coworkers would be empathetic. I decided to quit so that I could adjust to my new life in a better environment.
It’s not a moment in my life I’m exactly grateful for, but it was a pivotal point where I realized I needed to accept what was happening and adjust to my new life. Unfortunately, it took a lot of putting up with a mean girl at work, starving myself, and pushing myself beyond what I should have. Even today, I struggle to understand why Rita would choose to call me lazy. Before I had gotten sick I had worked overtime, took on extra responsibilities, and was really good at my job. My past work didn’t matter to her. It didn’t matter that I had a doctor’s note to back me up or that I went on disability leave. All that mattered was that she couldn’t see any physical symptoms, therefore she didn’t believe I was sick. I know that a person like that is not one I want in my life. If someone who doubts me has to be in my life, I’ve learned to deal with it. I’d like to say I learned how to accept it, but that’s not entirely true.
There are members in my family who believe that my illnesses are all in my head. Some believe that I just need to get over them like it’s something I can work at. Believe me, if I had that kind of control over my illnesses, I would’ve overcome them already. However, I’m not a deluded optimist, just an optimistic realist and I know that’s not how it works. I’m still learning how to handle others’ doubt about my illnesses and my reaction to it.
At this point, I try to speak openly and honestly about my experience, though I’m still nervous people won’t believe me. Unfortunately, others do too so it feels like we may forever and always be at an impasse. I try to remind myself that they’re looking out for me the best way they can. I’ll be honest, it doesn’t always make me feel better. After years of having multiple invisible illnesses, I still feel anxious when talking about it. I still doubt that people will believe me. I try my hardest to be open and honest about it because I do want more discussion about invisible illnesses. So many people suffer from them that any criticism at this point is ridiculous.
If You Know Someone Who Has An Invisible Illness
If you know someone who has an invisible illness here’s my advice: listen with an open mind. Whether or not you see symptoms, remember that you don’t know what they’re dealing with and it doesn’t need to make sense to you. I think people have the most difficulty with that statement. It doesn’t need to make sense. People who suffer from depression or generalized anxiety disorder often can’t find sense in their suffering either. So listen to them, empathize with them, and believe them. You have no idea how powerful believing is when it comes to an invisible disability.
If You Have An Invisible Illness
If you’re suffering from an invisible disability, you’re not alone. There are many of us out there and we all hear you. If you’re feeling alone, I recommend finding a support group. Within the first few months of having MdDS, I found a Facebook group for those with MdDS. I can definitely say that it has been quite a big help knowing I’m not alone. I get to read people’s stories and relate and learn more about this illness in the process. Whether it’s friends, family, forums, groups, or what have you, finding a support group can really help. Support greatly helps with your mental well being.