An invisible illness is defined as a chronic condition that is not easy observed by the general public. Invisible illnesses are extremely hard for people to understand. “But you look so good!” People are quick to judge others by what they see, and if they see someone that looks well, they cannot possibly have any sort of illness. People will not understand why one could be late to work, give up on social activities, or spend a lot of their time on the couch. People with invisible illnesses are labeled as lazy. It’s happened to me. If you are struggling with an illness that no one can see, I am positive it has happened to you too.
When people think of someone with a disability, they often think of someone in a wheelchair, using a walker, or by their general appearance. One with Down’s syndrome has classic characteristics visible to others. Someone missing a limb. There is no questioning if there is any sort of disability. In a survey, it was found that 26 million Americans, almost one in 10 people, were considered to have a severe visibility, while only 1.8 million Americans used a wheelchair, and 5.2 million use a cane, crutches or a walker. That makes 74% of Americans that live with a severe disability that do not use any devices. That’s a huge percentage of people that might not seem sick to you or me.
Some of the most common invisible illnesses include Lupus, RA, Crohn’s disease, Celiac disease, Ulcerative Colitis, Lyme disease, and mental illnesses.
Many doctors have a hard time diagnosing invisible illnesses, unfortunately, which often leads to many misdiagnosis. Ahem. Lyme disease. Those that are ill are often given a “feel good” diagnoses, like CFS or Fibromyalgia, which I firmly believe are a bunch of hooey and the doctor just plain can’t figure out what is wrong with you (Like it or leave it. My opinion, but these are invisible as well). Those are symptoms. Not an answer. In some cases, people are labeled by their doctors as depressed, have anxiety, hypochondriacs, or in some cases diagnosed as having Munchausen syndrome and Maunchausen by proxy if someone is trying to fight for their child that is sick. Don’t ever be afraid to get a second, third, or fourth opinion to try to get some answers. For some people, their illnesses can take many YEARS to get a proper diagnosis.
From my experience, I have been on both sides of the spectrum. Many people in my small town know the horror that I went through last winter. There was no invisible about my illness. I was losing weight at a rapid rate, all the way down to 105 pounds, something I probably haven’t seen since elementary school, I was either white, grey, or jaundiced, had to use my wheelchair to travel any distance, walking problems, and of course the severe verbal and physical tics. Some people were kind, and wanted to help. I should say a lot of people wanted to and did. But I will say on the other hand that some people left me teary eyed, as they said things like “what’s wrong with you?” to me.
A year later, I have made a lot of steps in the right direction. I get the “you look good!” comment, which means my disease is becoming more invisible. I have gained most of the weight back that I had lost, my tics have calmed down tremendously, and there are many days that I walk nearly normal again and I don’t require a wheelchair. Most of the time my IV powerline is covered up on my chest, usually with a winter scarf if I am wearing a lower cut or v-neck top.
I will note however, that most people see me when I am at my best.
You don’t see the days that I am curled up in excruciating pain on the couch, or literally cannot move my body as I feel completely paralyzed or am in a vegetative state. You do not see me crying uncontrollably in a seizure, or just plain because I want it all to stop. You don’t see me when I can’t stop ticking. You missed me when I parked at the local bank and pharmacy and sitting in my car for several minutes, knowing I am not capable of going inside, and driving away.
When you see me at my best and didn’t know me, you would assume that I am either tired or a little hungover. It is becoming invisible. Unless you have an invisible illness, there is simply no way of understanding what can be going on in the inside. How much suffering and pain you can go through and it is your secret to the world.
Invisible or visible? That is a tough one to decide. Coming from both sides of the spectrum, sometimes I wish that my illness was more visible, because having people assume you are doing awesome because you look okay can be extremely frustrating. Just because I am looking better than I was, by no means that I am feeling the way I look. I feel like stapling a sticky pad to my forehead and each day writing how I am feeling, and peeling off the pages day by day, as every day can be different with Lyme disease.
On the other hand, I crave a sense of normalcy. Being able to hide what I am going through with a smile. No one knowing any different. it is a good feeling after getting strange looks for so long.
I asked my fellow Lyme readers if they would rather have an invisible or a visible illness. This is what they had to say:
“I have always ALWAYS said, I wish I could carry an a machine around in front of me so people could see what is going on. Because the outside is looking “good”, the inside is shot to hell!”
“Visible so I don’t have to put up with idiots saying oh you look so much better, when I am in severe pain, my head vibrating, hurting.”
“I guess there is a balance, more visibility would really help. I half-wondered if the LLMD could give is all some drug that makes hair all fall out. As soon as you “have to go bald” all of a sudden it’s “oh no something must be really wrong”. I think we go through the same hell as some cancer patients and some HIV patients.”
“Invisible works for me.”
“Visible. I to get told I’m looking well at the worst times.”
“That’s a toughie…..it’s tough to feel ill AND look ill (more depressing) so invisible is probably better.”
“I don’t know to be honest. That is truly a catch 22 question for me. Yes, having visibility does raise awareness more but I don’t want sympathy, just empathy and compassion. I just want to be treated like anyone would treat their friend/family member whether the disease is visible or not. The invisible piece is what makes people not take others seriously, but if you are a real friend, if you really care then you would take your friend and/or family member seriously. I guess more than anything, I just wish that people followed The Golden Rule.”
“The truth is I don’t want people to see how sick I really am. It’s barely ok that my friends and family think they know how sick I am . The reality is that every single day whether I leave the house or not is a huge struggle to be alive. No one gets what it takes to get up and showered and dressed ,let alone the meds and treatments and dr app. So if I manage to go anywhere I want to be just me . But more and more just me doesn’t look the same . I can’t hide it like my last birthday anymore and the truth is I want to.”
“It is a catch 22. The but you look good response gets frustrating at times and I feel like I’m not taken seriously because the disease isn’t always a visible sickness. My cancer was easier to handle than this. Then at least people understood cancer. They never question me being I’ll even if I might look ok.”
“I’m going to say ‘depends’. Having it visible may make others treat you even worse. Humans are visual and they lack compassion to things they cannot see as well. In particular if it upsets them. However if it’s visible for an animal they have compassion, towards humankind often it’s disgust. (not always but often). So I don’t have an answer for ya it’s in the middle.”
As you can see, there was definitely a variety of opinions on this issue, all knowing far too well how things can feel having a visible illness, an invisible illness, or having also been on both sides of this spectrum.
Society and those having an invisible illness is extremely difficult. People don’t know how to react around those with invisible illnesses. This can be very uncomfortable for them, as they cannot relate, and they really don’t know how you are feeling. Some people will just plain not understand. Be cruel. This is inevitable. Many will lose friends or family, all because of misunderstanding and misconceptions of how terrible an invisible illness can really be.
I wrote two blogs awhile back, about the things not to say or do and the right things to say or do around those with a chronic illness. These apply very well to those with an invisible illness.
What are some things not to say? I wrote a blog post awhile back about things NOT TO SAY OR DO around those with a chronic illness: https://kimmiecakeskickslyme.wordpress.com/2013/10/14/things-not-to-say-with-someone-with-a-chronic-illness/
What are some of the right things to say? I also wrote a post about the RIGHT THINGS TO SAY OR DO around those with a chronic illness: https://kimmiecakeskickslyme.wordpress.com/2013/10/16/the-right-things-to-say-or-do-around-those-with-a-chronic-illness/
There will always be tough situations and difficult questions when having an invisible illness. Don’t be ashamed if you need to cancel plans because you are having a bad day. Don’t make yourself feel guilty because people want more from you and you aren’t capable. Know your limitations. You can only push yourself so hard, and it can be detrimental if you overdo things (yeah Kimmiecakes).
Be accepting that people might not believe you or you just can’t talk about your condition with them. These people might be ones you don’t want to give up, but know if they are making you feel worse isn’t the best of things and sometimes you have to let them go. Positivity works miracles in healing. Snipping the fat, as I like to call it, works wonders in helping this process.
Don’t be afraid to ask for help if you need it, whether it is going to the store to pick something up for you, help making dinner, or doing some chores that might be hard to do.
What are things that I can do? I think some of the best things to do is EXPLAIN to others why things are hard. What is bothering you. No, I am not telling you to nag or whine, those are two different things. See if an unconvinced friend or family member wants to sit in with you at a doctors appointment. Maybe then they will have gained some more insight to your condition.
Find people to talk to. Sometimes invisible illnesses can be extremely lonely. Support groups are a great resource to meet others with similar struggles to vent, ask for advice, and share your stories. If things become overwhelming for you, don’t be afraid to talk to a therapist or counselor to sort through your feelings.
Be an advocate. I think this maybe one of the most important things to do out of everything. Teach others about your condition and share your story with others. I always tell people that I know to watch the documentary “Under Our Skin”, free on Hulu, to learn more about Lyme disease. I feel people are most accepting when they know more information about your disease.
I should note, whether a disease is visible or invisible, people cannot gauge how you are feeling and how you handle things. Everyone is different. That is something that is important to never forget. Never “assume”. There is simply no possible way of knowing what someone is going though. Share share share away folks! Maybe just maybe, you will get the right reader that will want to learn more about your condition. Best wishes!
http://www.bandbacktogether.com, everydayhealth.com/pain-mamagement/invisible-illness-when-others-cant-see-your-pain.aspx, butyoudontlooksick.com, mollysfund.com, http://richardmcohen.com/chronic-disease-the-invisible-illness, invisiblediseases.org/com photo credit beatinglimitations.com