An invisible illness is an illness or disability that is not immediately apparent to others. People with visual, hearing or pain disabilities are among those with the invisibility factor. Invisible disabilities are chronic conditions that severely impact normal activities of daily living (ADL’s). 96% of individuals in The United States who suffer from chronic medical conditions, show no outward signs of their illness. Over 10% of those people are considered disabled.
Invisible illnesses can interfere with the ADL’s of those with chronic conditions even if they are not considered disabled. Considering the astronomical hoops that one is expected to jump through just to get their disability case processed, this low number is not surprising. Work, school, relationships, physical activity, and sleep can all be impeded at any moment and most often with no warning. Most people do not or cannot understand the challenges that these people are met with because they are unable to see whats going on. Though friends or family members may notice that something isn’t quite normal, they are most likely unable to pinpoint an exact answer to their questions. Or worse, when the answers are given and the disability or illness explained, it’s received with disbelief, misunderstanding, or lack of empathy.
A little over a year ago, the last two fingers on my left hand went numb. It was a cross between numb and that pins and needles feeling we are all familiar with when a limb falls asleep. Problem was, it wouldn’t go away. After a few days I couldn’t take it anymore and went to my family doctor. Believing I had somehow pinched the ulnar nerve in my arm, I was prescribed anti-inflamatories, a round of steroids and physical therapy. Instead of relief, the sensation spread. The pins and needles feeling turned to pain, spread to my entire hand and was moving up my arm. Thus began a grueling, frustrating, and exhausting journey that encompassed multiple specialists, tests, blood work, scans, emg’s, more specialists, more blood work, and more scans. To date, I have seen a family doc, an internal med doc, 3 Neurologists, a pain management doc, a massage therapist, a chiropractor, an acupuncturists, and finally, a specialty rheumatologist.
On January 10th of this year, while seeing the specialty rheumatologist (that took almost 4 months to get into!) I finally got an answer. I wanted to hug her! I had spent over 10 months not knowing what was happening and what was wrong with me. My pain was nearly unmanageable, I wasn’t able to work, and in November, the same symptoms that I had experienced in the beginning of this hellish journey, not only spread to my entire left hand and arm, but decided to jump on over and start attacking my right one. I was diagnosed with CRPS. I immediately joked, asking if that were similar to CRS- can’t remember shit?….because I think I have that too! hahaha Thankfully, my rheumatologist, Dr. Wildy, is not only a genius, she has a fantastic sense of humor.
CRPS stands for Complex Regional Pain Syndrome. Wikipedia states “Complex regional pain syndrome (CRPS) formerly reflex sympathetic dystrophy (RSD), “causalgia”, or reflex neurovascular dystrophy (RND) is an amplified musculoskeletal pain syndrome (AMPS). It is a chronic systemic disease characterized by severe pain, swelling, and changes in the skin. CRPS is expected to worsen over time. It often initially affects an arm or a leg and often spreads throughout the body. CRPS causes obvious nerve damage and leans towards the more painful and difficult to control syndromes. CRPS has the unfortunate honour of being described as the most painful long-term condition (of those that have been tested), scoring 42 out of a possible 50 on the McGill pain scale, above such events as amputation and childbirth.” There is no cure. This will eventually lead to diminished bone density, and all that can be done is to manage the pain.
So now you are probably asking yourself why in the hell did I want to hug my doctor?! That’s an easy one….. Because she gave me an ANSWER!!! Going through every bit of the hell I was going through was made even worse by never being able to put a name to what was happening to me. Finally having a straight forward answer was like having 100 pounds lifted off my shoulders. I was beginning to feel as if I were going crazy. I was seeing top specialist after top specialist, being poked and prodded at each and every visit, being told I have nerve damage but no one could seem to find the cause or why it was spreading. Yep, something is definitely wrong with you, we just don’t know what exactly or how, or why, or if there is anything that can be done. So…have a nice day, take these pills …..then they would push me off to yet another doc so I could go through the same damn thing with someone new. Yay me! Trust me, NOT knowing what’s wrong with you is much more difficult to handle than most people would think.
I was finally able to explain to my family and friends exactly what I was dealing with. I still get the ‘you feeling better today?’ questions, and the ‘you look like you are doing much better’ comments from various friends or family members. This continually perplexes me. NO! No I am NOT feeling better today, and uhhhh thanks?? I think….sooo today I don’t look like shit as much as I did the last time you saw me? I am in constant pain, 24 long hours a day, 7 days a week, awake or asleep, it never, ever, ever ends! I take heavy-duty medications that help (and sometimes don’t help) lower my pain level from a 12 on a 1-10 scale down to about a 4. Even when I am smiling and laughing and having a great time, I am in pain. If I am awake, I am in pain. If I am sleeping, I am in pain. For over 14 months now, I cannot name one single moment that I have not been in pain. Not a single second!
I was in the healthcare industry for over 16 years. I worked as an MA for internal med docs and family med docs and I have dealt with chronic pain patients too many times to count. I was always sympathetic and professional and tried to be as understanding as possible. But I will admit, I never truly ‘got it’ until I experienced chronic pain myself. I truly believe that unless you personally experience chronic pain….you can never fully understand what it all entails. So I kind of understand where people are coming from. If you get sick, eventually you get better. That’s a logical thought process. However, this isn’t a virus or an infection; this will never get better. This isn’t a cancer, it can’t be removed and I won’t go into remission, and it isn’t going to shut down my organs and cause me to die, although there are many times throughout any given day that I feel like I am dying. I am in never-ending pain and it will never go away. Period. So I may be smiling or laughing or had a little more time to pull myself together, but I am ALWAYS in pain. It never ends. Never.
People can’t see pain. It’s not visible like a broken limb. People have a difficult time comprehending what they cannot see. To me, that is frustrating. Besides being in excruciating pain, dealing with a brain that can barely remember what I had for lunch an hour ago, and coming to grips with the fact my life is forever changed by this disease, I find myself being frustrated and mad and hurt that I have to constantly explain myself or my actions. Or worse….not being able to explain because instead I get the looks that say ‘i don’t believe you’ or ‘she is using it as an excuse’ or ‘it can’t be that bad.’ ……and so many, many more looks. I won’t even bother to mention the things that are said behind my back. The horrible things that do in fact make their way back to my ears. It’s hurtful. I try my best to ignore it. But, I am human and sometimes it’s very disappointing to find out that people you once thought loved and supported you, can’t bother themselves to learn about your disease and have some compassion. No matter how inconvenient MY disease is to YOU, I promise you, I am suffering a million times more than you will ever know. Sometimes I wish there was a way that people could see what I have. That maybe that would make it easier to understand so the looks will stop. Things like that make me appreciate those that do understand that much more. The people in my life, that despite the smile on my face, can take one look at my eyes and know the truth. That one moment of understanding, or those few words of encouragement mean the world to me. I can’t thank those people enough.
I have a very, very close friend that was recently diagnosed with Mal de debarquement (or Mal de débarquement) syndrome (MdDS, or disembarkment syndrome). Symptoms most frequently reported include a persistent sensation of motion usually described as rocking, swaying, or bobbing; difficulty maintaining balance; extreme fatigue; and difficulty concentrating (“brain fog”), dizziness, visual disturbances, headaches and/or migraine headaches, the feeling of pressure in the brain, confusion, and anxiety she told me that many patients also describe ear symptoms such as hyperacusis, tinnitus, “fullness”, pain, or even decreased hearing. Cognitive impairment (“brain fog”) includes an inability to recall words, short-term memory loss, and an inability to multi-task, unable to use a computer for any length of time and some MdDS sufferers report they are even unable to watch television, the symptoms are very debilitating and can fluctuate on a daily basis, affecting greatly daily and social activities.
She too was on a long journey, frequently frustrated with doctors and the inability to get a straight answer. When she finally received a diagnosis, she was eager to explain what was happening to her family and a few close friends. She too has, and continues to experience the negative effects of having an invisible illness. Some people just can’t grasp the concept of things they can’t see. However, in her professional life, she is happy that people can’t see what’s happening to her. I remember the day she told me about her disease and the problems she faced. I understood her frustration. She was afraid that if people knew what she was going through they would stop trusting her to do her job. I remember thinking how awful that was. I wanted people to see what was going on so I didn’t have to deal with the added pressure of handling others’ questions and doubts. So I wouldn’t have to carry more emotional stress. Here she was wishing the invisibility of her disease to stay strong to avoid the questions and doubts that she could do her job.
A couple of weeks ago I saw Mal de debarquement (MdDS) being discussed on The Doctors. I was so excited, I called my friend right away and left her a message. I left her a message saying I was happy to see a popular medical show shed light on a rare and mostly unknown disease. She called me back once she returned home from her vacation. She told me that she cried when she listened to my message because she thought ‘Kat believes me’ and that meant so much to her. I assured her that from the moment she shared with me what her diagnosis was, I believed her, never doubted her for a moment. Technically, I believed in her even before she had a diagnosis, I believed in her when she first began her health issues. For her, something in that message, at that moment in her life, it meant even more than just belief. That is the feeling I experience in those knowing glances and words of quiet encouragement I get from those people I love that see through my laughter and smiles.
Invisible illnesses, a double-edged sword. For some of us, it’s a curse that takes an emotional toll on our hearts, making us question those we have never questioned before. For others, it’s a cloak that keeps our secrets and preserves portions of our lives we aren’t willing to compromise. It’s a bright light that opens your eyes to the people in your life…..the ones who support you and the ones who doubt and hinder you. Double-edged sword indeed. Sometimes it’s not fun and the hurt can run deep, but there is a peace and a joy that comes with truth, and for me, that will always outshine any lasting effects of negativity.
Educate yourselves. Learn about things that are beyond you. If you love and care about someone, seek to understand what they might be going through. We have all heard the expression ‘walk a mile in someone else’s shoes’ …..well, do it! Imagine your life was suddenly and drastically changed without so much as a moments notice…..how would you want your friends and family treating you? My guess….. Honesty, love, respect, understanding, and empathy.
Kat Smith is a 39-year-old insanely busy mother of three fantastic young people. Married to an amazing hubby Jeremy, a man 7 years her junior (he had to be younger to keep up with the fun at her house).
She is a full-time working parent dealing with a sometimes debilitating nerve disease, and a part-time ex-husband. She has been writing for decades yet she is new to blogging. She writes to expose her truth, shares her hobbies, feelings, struggles, triumphs and daily survival. She loves a great gel pen, photography, DIY projects and she tries not to let her OCD make other people crazy. Learn more about Kat on her personal blog: www.mytaintedview.com Follow her on Twitter: @MrsKatSmith and Pinterest.