Do You See Me as I Really Am?
Do you ever get frustrated while waiting for parking spots for people with disabilities only to see someone with no cane, walker, wheelchair or other obvious disability come out of the store and drive away? I know that I used think that, until I learned about what it means to have an invisible disability. I was very shocked to learn that there are hundreds of illnesses that are considered “invisible.” Some examples include: Congestive Heart Failure, Hypertension, Pain, Diabetic Neuropathy, Back Injury, and Depression. What is an invisible disability? Many diseases and disabilities are not visible to the naked eye. What that means, is unlike a physical disability which might require a person to use adaptive equipment, such as canes, walkers, scooters, or wheelchairs- invisible disabilities are hidden, and the person usually suffers in silence. As outsiders, we are oblivious to their suffering, as we watch them walk across the parking lot. In some cases of Autoimmune Encephalitis, patients suffer from severe enough physical disabilities that adaptive equipment is needed, but this is not common. Although Autoimmune Encephalitis does not always result in physical disabilities, it does not mean that person would not need the use of a parking spot designated for a person with a disability. What makes Autoimmune Encephalitis an invisible disability are the challenges with ataxia, neuropathy, fatigue, chronic pain or memory problems. This is but a few examples of symptoms that patients with Autoimmune Encephalitis live with that are ‘Invisible’ to the public.
Autoimmune Encephalitis is an invisible illness. The symptoms and mechanisms that are involved impact the brain, which is not something obviously seen. A person with AE can look well, whole and healthy on the outside, while suffering on the inside from memory loss, psychotic symptoms, depression, pain or side effects from medications. While most patients silently battle these symptoms on the inside, they face outwardly battles with friends, family members, spouses, and coworkers who don’t understand. Many face statements such as, 'I thought he/she was ill, doesn't look sick to me”. We laugh and joke. We go about our daily lives ‘faking it’ (hiding our suffering). We ‘Warrior on’. We Warrior on as we are being judged, and sometimes judged openly. When things get tough, we fear expressing our pain and suffering, because even though we are Fighting a life threatening illness, we are seen as ‘complainers’ or accused of being ‘attention seekers’. Just because you can’t see my fight, does it make it any less important? Our invisible illness becomes another battle we end up fighting as we are condemned by the ignorance of our disease.
The fact that we are so often not seen as the person we really are, is hard to bare. What are we to do? Are we supposed to go around with a sign on us that says, “we may be making an attempt to fit in and keep up but you have no idea what it is costing us?” Coworkers think that because we are working we can't really be fighting a life-threatening disease, and thus, we must not be suffering. Why must we justify our suffering to others? What is ‘invisible,’ is the effort it takes to just get out of bed, shower, dress and make a morning meal. Many of us are exhausted by the time we leave the house and prepared for the day’s events by eliminating activities in our lives the day before to ready ourselves for the scheduled challenges in our lives. Our lives are filled with managing all the time off needed for Doctor's visits, tests and treatments. Some co-workers may complain saying: “Who gets that much sick leave and personal time, must be getting a special deal.” When the reality is, NO! We already used all of our sick days, personal days and vacation days, now we just don't get paid. That of course is if we have a job with those benefits.
I'm sure that many of us have seen the lists of things either not to say to chronically ill people or suggestions of what to say. Well I have a suggestion that sums it up. If the only thing you can say is: 'Wow you look great', then please forego that and just say “Hi” and leave it at that. Don’t be afraid to be honest with me. I don't wish to seem ungrateful but, hey, I have a mirror and I know what it took to just look alive this morning. What I mean to share with you is: “You look great” can be the straw that breaks the camel's back when you are in pain, depressed, fatigued and spent the night convinced that there were strangers in your house who no one else could apparently see! Instead of focusing on looks, try saying something supportive like: “Hey, how are you feeling today?”, or “What can I do to help you finish this project?”. How about: Can I drive you somewhere?” or “Pick something up for you?” or “I don't know what you are going through but I can imagine how tough you must be to keep it together the way you do”. In short, the best way we can honor people who suffer from invisible illnesses is to never assume that they are well or ok, just because they look that way. Instead, offer support and kind words, or say nothing at all.
This year Invisible Illness week is October 15th to October 21st, Our goal is to have people see us and not judge us 52 weeks out of every year. If we can accomplish that, we won't have to have an Invisible Illness week. Be kind to each other and hopefully others will be kind to you. To all those who have an Invisible Illness: Warrior on!
