But you don’t look sick:  Invisible Disabilities

There is an unfortunate stigma on many diseases that are painful and debilitating leaving us no longer able to work or to participate in what was once a “normal” and active life. Some may not show any outward signs of illness. These are referred to as invisible disabilities. There are many such diseases that can fit into this category: Lupus, Rheumatoid Arthritis, MCTD, and Myositis, to name just a few.  Many of us tend to look healthy at first, but in no way does that mean we are not sick. “But you don’t look sick” can be a statement that is a setback for many of us when trying to get a diagnosis and can be hurtful.

Many people have said to me over the years, “But you don’t look sick” or “Well, you look great.” Many are well-meaning with their comments while others seem to cast doubt as if I am truly sick. This makes for a difficult existence when you find yourself in the invisible disability category since doctors are guilty of this seemingly innocent statement and may make judgements based on our appearance. This very predicament is a large part of why it took over two years for me to get a true diagnosis, while having many misdiagnoses along the way.

When I became ill in 2003 my main complaints were pain, weakness, fevers, and fatigue. Could these symptoms be more vague? These lasted for about two weeks before I lost use of my legs, collapsing on my parents porch one afternoon, unable to do move. I knew then my life would never be the same.

I was taken to my local hospital by ambulance in a terrified state.  I was admitted immediately for what ended up being a ten day period of which I endured test upon test only to find my doctors stumped. On the tenth day, I was transferred to Johns Hopkins, one of the best hospitals in the country. I was an inpatient there for 4 days and was seen by multiple specialists whose final diagnosis was psychosomatic illness and referred me to a psychiatrist. My family and I were completely flabbergasted that these doctors thought I was mentally ill and making myself sick. But, for the sake of moving forward to truly find out what was wrong, I saw the psychiatrist and was given a clean bill of mental health, aside from situational depression.

My next attempt to get a diagnosis was with the University of Pennsylvania. There I saw a Neurologist and a Rheumatologist and both told me there was nothing they could do for me. Doctors kept telling me that whatever was wrong with me was not “in their specialty.” I became very frustrated and traveling two hours each way to these doctors was difficult for me. My health was continuing to decline and it seemed as though I would never know what was making me so sick. Thankfully, with the help of my parents and my continued determination we knew we could not and would not give up.

After much thought and exhausted from the travels, we decided to see a local Rheumatologist who had been a part of my initial stay at my local hospital. We figured we would see him outside of the hospital setting and relay to him my lack of progress and inability to find a diagnosis. It was a good thing we did, too! His first words were what finally gave me hope and eventually a diagnosis. He said, “Has anyone ever ordered a muscle biopsy?” Instantly it made perfect sense. I was having muscle pain and weakness and while other doctors had performed biopsies on pretty much everything else, they had done so with my muscles

A week later I had the biopsy and it proved, without a doubt, that I had polymyositis. However, upon returning to Johns Hopkins with hope of starting treatment for this rare disease, I found nothing but doubt. And part of it, I believe, was because I did not look sick on the outside.

With the biopsy results in hand, I returned to Johns Hopkins a few weeks later thinking they would now create a treatment plan to arrest this autoimmune disease that was wreaking havoc on my body. Sadly, I was mistaken. The doctor at Hopkins read the report, looked me in the eyes and said, “You do not have myositis.” Of course I immediately became defensive as well as confused wondering how she could make that statement after reading the biopsy report that concluded I did in fact have polymyositis. She asked that I arrange to have the biopsy slides mailed to her so she could view them under the microscope for herself. It was an upsetting ride home, however I got right to work and she had the slides in hand within a week. I never did hear back from her directly, but my primary care doctor received an addendum to her original report that stated I did in fact have polymyositis. In my heart, I felt she owed me at least a phone call with an explanation or to explain what is next. That never happened.

Looking well on the outside does not give doctors, or anyone else, cause to dismiss us. I will admit that after researching myositis at that time I found that it is a difficult disease to diagnose. At the same time, I found that I did not display the “typical” symptoms or blood test results. But, I was not the only one. According to the research at that time, roughly 25% of those who have myositis do not display the so-called “textbook” symptoms.

Throughout this process I learned a valuable lesson; we must be our own healthcare advocates. Had my family and I simply took the word of the first few doctors and gave up, I would be in a wheelchair now or much worse, not here at all. As it is I must walk with a cane partly due to the two-year delay of my diagnosis which prevented me from starting effective treatments early on and partly due to the nature of the disease itself.

In advocating for my own health, I began doing some things I recommend anyone do when facing an ongoing illness:

  • Take someone with you to every doctor’s appointment. It should be someone able to take notes and who can answer questions and fill in blanks of things we may not think to ask. When you start seeing multiple doctors you begin retelling your story over and over and it becomes easy to forget important details.
  • Get a copy of all your medical records. Keep a copy in a binder with you so when you see new doctors you have everything they might need to help you. This helped me avoid delays during appointments.
  • Keep a journal. Include a page for every doctor’s visit with notes on what was said, medications changes, lab results, and other important details. Outside of the doctors office, keep track of your symptoms and jot down questions you want to ask at your next appointment. For me, this journal become a lifeline in my fight for a diagnosis.
  • Finally, do NOT give up! Keep a positive attitude and realize that there are doctors out there who will easily write you off when you do not fit the exact or textbook symptoms. At the same time there are doctors you will find who are willing to realize we are all different and will react differently to disease manifestation. Keep in mind that doctors work for you which means you can fire them and find another. Never be afraid to stop your doctor and ask questions. This is our health we are talking about.

“But you don’t look sick” may come across as hurtful when you hear this from friends and family. Try to keep calm and do not become defensive. Communication is important so I try to explain how I feel on the inside. Also try and realize that some people do not know what to say to those who are sick so words may come across as sounding “wrong” when their intentions were to make you feel better. This is a large part of why I started a myositis blog and Facebook group, Polymyowhat: Understanding Myositis. With these tools, we have a place to share our stories, get support from one another, and learn how to live better with myositis.

In our Facebook group we have been discussing plans for the future of our blog and group to focus on myositis awareness. I hope we can work together to spread the message that myositis is a rare disease, it is life-changing, may be painful, and is often debilitating. We need to work towards better treatments and educating others, including doctors, on the importance of myositis and early detection so that we have a chance to avoid the most serious of complications such as muscle atrophy, lung disease, and cardiac involvement.

For some, you may still appear in the “Invisible Disability” category while others may have some outward illness appearance. No matter what you look like remember who you are on the inside. Do things to help others. Be a beautiful person by listening to a friend in need, educating others, and loving everyone for who they are on the inside, without prejudice.

For more information on Invisible Disabilities, please visit the website below.
http://www.invisibledisabilities.org/

The Invisible Disabilities Association has a wonderful and helpful website. There is a booklet that goes into detail on invisible disabilities and I recommend you read it and have your family and friends read it as well.

(A note on Johns Hopkins – The content in this article is only my opinion and experience. I have many other friends and family members that have received excellent and life-saving care from Johns Hopkins. Also, the Myositis center at John Hopkins was not yet established when I was first there. I am now a patient at the Johns Hopkins Myositis Center receiving excellent, life-saving care.)

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Jerry Williams, the Founder and President of MSU, was diagnosed with Polymyositis in 2003 at the age of 27. Since his diagnosis, Jerry has made it his mission to help others living with the rare disease, Myositis. To this effort, Jerry is involved in many different aspects such as education, writing, helping support and answer questions from patients and caregivers, social networking and website development, and much more.

View more information: Jerry Williams

4 Comments
  1. Jerry Williams 4 years ago

    Yes you were Ellen. One of the very first to join the group! I think I made the right call too especially with myositis being so rare. Thanks for taking the time to read stuff; just shows how caring you truly are! I just wish I had named it differently since I had been excluding people with other forms of myositis since they assumed it was for Polymyositis only. But, Facebook won’t let me now.

    I am glad you are still a part of the group, whether you have myositis or not. As I said, your expertise in caring is valuable to us and to me as your friend! Much love Ellen!

  2. Ellen Fulmer 4 years ago

    I was one of the first to join your fb group. Early on you were considering of it being for all with chronic disability. But, I am so glad you kept it for those sufering with myositis. It is very important for you guys not to be lost in a vast group, but to be able to truly understand and help and be there for one another. I know it is invaluable to all in your group to share symptoms and treatments, along your with experiences related to myositis. I read how you are there for one another in the posts. You guys keep each other strong and with a sense of not being alone in your journey. <3

  3. Jerry Williams 4 years ago

    Ellen,

    Thank you so much. I appreciate you taking the time to not only read the blog but also participate in our group. You are one of a very, very few that is in the group that does not have myositis but your expertise as a nurse is invaluable to us. I am so sorry you have to endure so much. Chronic pain is very frustrating and can, as you well know, lead to depression if we do not talk about and advocate for ourselves and others. You know I wish you the best and hope that you are on some type of medication that can help reduce the pain level some. It is a tricky mix for sure. I too am proud to be your friend Ellen! With love!

  4. Ellen Fulmer 4 years ago

    Jerry, This is beautifully written. As you know, I do not have myositis. But, while working as an RN, fell out of an elevator on my way to an inservice one day. I also was misdiagnosed for over a year. All of my Drs dismissed me. During my 3rd!! Lumbar Myelogram, a radiologist noticed narrowing in the Thoracic spine and suggested further “appropriate” studies. A thoracic (after multiple lumbar) MRI showed that a slipped disc had been only a milimeter away from severing my spinal cord completely. All of a sudden, I’m rushed to emergency surgery, because if I “so much as trip on my shoe lace”, I will be paralyzed from my upperchest down for life. Now the scar tissue, after two 8 hr surgeries and sawed ribs, is so proliferative the pain is unbearable. Everyone says I look well. I understand, not specifically about myositis, but how frustrating a chronic debilitating illness can be. I commend you on reaching out, via your facebook page and your blog for reaching out to help others, with all you are going through. I am proud to be your friend.

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