This week is Invisible Illness Awareness Week, which is something that I am very passionate about. Invisible Illnesses are any diseases or illnesses that do not have an effect on the person’s physical appearance, hence the word invisible. Or not much of an effect, not enough to make a person appear “disabled”, whatever that is “supposed” to look like. These illnesses range from anxiety and depression to endometrosis and to fibromyalgia and multiple sclerosis and many, many other chronic diseases. The hardest thing for many people living with an invisible illness is that because they do not look like anything is wrong, other people do not understand and are quick to pass judgement. This judgment can also sometimes come from doctors as well. You truly never know what another individual is going through at any moment unless you ask and even then, you probably wont get the whole truth.
To anyone else, I look healthy, there was a time when I didn’t and I hope to write about that someday, but right now it still gives me very unpleasant PTSD flashbacks every time I try to write a blog post about it. I was diagnosed with IBS when I was 19 and have had varied degrees of difficulty with this over the last 12 years. I was diagnosed with Agoraphobia, Generalized Anxiety Disorder, Depression and Panic Disorder when I was 25. I have suffered from them much longer then that, but was not officially diagnosed by a psychologist until 2011. Although I had been seeing my primary care physician about my anxiety and depression since I was about 19. I was diagnosed last year with Obsessive Compulsive Disorder and medical PTSD, in addition to my pre-exsisting mental disorders. I was diagnosed with “slight” endometriosis and pelvic congestion syndrome in 2014. I say slight because after a very invasive and painful surgery, my doctor at the time only found endometrosis on my right lateral ligament in my pelvic cavity, whereas most women have a great deal more. However, because of it’s placement it cannot be removed. You would be surprised at how much pain that one little spot can cause. I was diagnosed this year with Cervicogenic Vertigo, after having disequilibrium and vertigo 24/7 for 2 years since around the time when I began weaning off of my previous anti-anxiety medication. I feel like either the ground or I am always moving, like I am sitting on a boat on a lake moving with the waves. Or if you have ever been on a cruise or a boat, having “sea legs” when you get back on land. Except it never goes away and it’s constant. I do have previous injuries to my neck from several car accidents, including a bulging disc, bone spurs, DDD, scoliosis, etc. There are a few other symptoms and problems I have that began when I was weaning off of my previous medication and never went away, although it has been 1 year since I have been off of those drugs.
I take a very, very small dose of medication daily for the mental disorders, I attend therapy weekly with a wonderful therapist, I had pelvic physical therapy for several months which improved my reproductive symptoms by about 40% and I have been in physical therapy for about 5 months for the Cervicogenic Vertigo after being bounced around to 4-5 different doctors and specialties. The problem now is that even the people who see me daily, think “everything is fine”. Physically I look fine and I am really good at faking it, as people get really tired of hearing about chronic illness after a while. I don’t bring things up anymore with my friends unless they directly ask me, which they rarely do because who wants to talk about physical therapy all the time? No one. I certainly don’t. However, when you have an invisible and chronic illness, a lot of days that is your life. I have to spend 45 minutes a day doing physical therapy at home in addition to 1 hour a week in an office. It’s a big part of my day. And I am lucky in the way that I don’t have an invisible and chronic illness that causes me constant, agonizing pain. I am in discomfort every day and most days I have pain, some days it is fairly severe between the injuries to my neck/back and my reproductive problems, but I have learned to function most days with the pain. Not function enough to have a 9-5 job, but enough to clean the house, do the laundry, do my physical therapy, run the errands, cook and work from home.
I am sure that everyone who suffers from chronic and invisible illnesses have a different opinion on many of these topics and perhaps a different outlook on things and that is fine. I want people to realize that even if you ask me how things are going, I am probably not going to tell you the absolute truth because unless you are close family, you honestly probably don’t really want to know. You want me to say, “I’m fine, thanks” because that keeps the conversation comfortable and no one really wants to be in a conversation that makes them uncomfortable. However, when all of my problems were the worst and I was very open with everyone around me, I found many more people than I ever would have guessed who suffered from things such as anxiety, depression and endometrosis and were always too embarrassed to talk about it. One of the worst things you can do with a chronic illness is be embarrassed about it, no matter what it is.I certainly am not. I have had 5 surgeries, 3 colonoscopies, 1 sigmoidoscopy, 2 endoscopies, 7 different rounds of physical therapy for my neck & back, injections directly into my the discs between my vertebra and so many ultrasounds, MRI’s, CT scans and other random procedures over the last 12 years I have lost count. But unless you are checking out my surgery scars while I am in bikini, I look healthy to anyone who doesn’t know any better.
You would be surprised, or maybe you wouldn’t, about how many rude and unwarranted comments I have received from a variety of family, friends, co-workers, classmates and ever complete strangers over the years. The first time is happened, I was 21. I have just had surgery to remove 1/4 of my cervix due to Stage 0 Cervical Cancer (I have had surgery for this twice; Stage 0 mean there are cancer cells on the cervix, but they have not spread or formed a tumor yet) and my doctor gave me a temporary handicap parking permit for school. Walking was extremely painful for 7-10 days after surgery and that way when I got to class I wouldn’t be in tears or taking more painkillers. Well, I parked in handicap parking at Meijer after class to get groceries and a gentleman around the age of 60 walked right up to me and said, “Why do you have a handicap permit? There is nothing wrong with you.” I’ve had bosses who thought I was a flaky college student and didn’t believe me even when I brought them hand written notes from my doctors. I have had friends not believe me when I said I needed to go home because of symptoms or pain. The list goes on. And I guarantee that this happens much more often then you realize. And it’s hard to deal with even after you have been dealing with it for a decade or longer.
The point of this blog posting was to make you aware that this week is Invisible Illness Awareness Week and to try to get more people to understand the wide range of illnesses that fall under this umbrella. Be kind to everyone around you. Don’t make comments that might come across as rude or unkind. You have no idea what another person is going through on any given day. Just because someone looks “fine” doesn’t mean they are. Educate yourself and be kind to everyone you encounter.
Side Note: I have gotten many comments/messages in regards to some of my health concerns and I am always happy to chat with people and love hearing from others who have similar issues, so please feel free to post comments or my email address and other social media links are posted in the “About” section!