Invisible Illness and Disability

By Mia Maysack, PNN Columnist

A final once over in the mirror. I straighten my navy-blue blazer and fastened the top button on the very first dress shirt I've ever owned, reflecting upon how grueling the process has been.

Pursuing a disability case was an absolute last option for me.  Being a contributing part of the workforce is something I not only enjoyed very much, but it made up part of my identity.

There were moments I was unsure if I'd even make it to this point, but I'm grateful to have an opportunity to exercise the right to represent myself at my disability hearing without a lawyer.

When sharing this viewpoint with others, I've mostly been advised against it but the route of legal assistance proved a dead end for me (see “Taking Control of My Disability Case”). Other recommendations included: Do not smile or dress nice, don't show much personality at all, or mention hobbies like volunteering because it could be considered contradictory to my claims.

Being differently enabled does not make me any less of a person so I refuse to act as such. It’s frustrating to feel as though you've got to convince others of your truth and, as hard as you try, they still may not “get it.”

I'm aware that my illnesses aren't visible to outsiders and because of that they are questioned. I showed up to provide an authentic glimpse as to what invisible illness can look like and how it has impacted my life.

I live in a constant state of post-infection intractable chronic migraine -- head pain that has never gone away since the year 2000. This pain is expected to be life-long and incurable.

There are also daily cluster headache attacks, which are an entirely different beast. The cherry on top comes in the form of my nerves being hyperactive, resulting in a diagnosis of fibromyalgia.

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These conditions fluctuate. One day looks different than the next, but even at my absolute best there is still pain. Things can turn for the worse at any moment without warning and constant breaks are required for even simple tasks. I am not able to function optimally in a gainful work place environment, despite my countless attempts at trying.  

Between the nausea/vomiting, light sensitivity/vision disturbances, persistent fatigue, brain fogginess and the on-going discomfort, there hasn't been a single aspect of my life that has not been negatively impacted: relationships, activities of daily living, employment, higher education,  goals, dreams, aspirations....

I prolonged beginning the disability process due to the fact that I'm aware so many have it worse than me. I am thankful for my senses, mobility, the fact I can use the restroom on my own and feed myself, although there are periods daily when I can be entirely incapacitated.

Over the years, 34 prescriptions have been written for me -- all worsening matters as a result of the side effects. About 1,800 injections have been administered.

I now take full responsibility for my own wellness and have completely revamped my lifestyle to accommodate my conditions. I’ve also found a new passion for patient advocacy as a way to find a purpose in all of the agony, leading to the reality that I am my own best expert. It's empowering to be armed with knowledge on behalf of the millions who live with headache and migraine disorders.

While conveying this information at my hearing, I experienced more emotion than anticipated, especially when a friend took the stand to provide testimony as a witness. She reminisced on how we used to go dancing together and described how we could be so carefree. But over the years what seemed to have started as a slight hindrance turned into an everyday occurrence, rippling into less and less quality time spent. This took a toll on us both.  

I can only hope it came across that migraine matters, that it burdens us all, and everyone should care about disabilities because it only takes a slight change in circumstance to alter your life forever. I didn't choose to struggle every day with getting out of bed, to have much of my time flat out stolen, or to have many memories tainted by the relentlessness of my chronic pain.  

While awaiting word back on a decision, I cannot help but wonder. How many more times will they want to see and hear from me? I've already come thus far and I'm not giving up! 

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Mia Maysack lives with chronic migraine, cluster headaches and fibromyalgia. Mia is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Why I Keep a Pain Journal

By Barby Ingle, Columnist  

In 2002, I was in what was thought to be a minor car accident. After months of getting worse, noticing new symptoms and doctors telling me it was all in my head, I set out to find answers that made sense for what was happening to me. 

Many of the medical tests that were performed did not show any problems. Even so, my symptoms were still bad and getting worse. I started physical therapy about a month after the accident, which was excruciating and seemed to make things worse.

Flash forward three years, and I found my way to a pain clinic here in Arizona. My doctor took the time to listen to my history and examine me.  The thought of being examined again by a new doctor was frightening. After an hour with me, the doctor said I might have Reflex Sympathetic Dystrophy (RSD), a painful neurological condition. A test later confirmed I had RSD -- as all my signs and symptoms had pointed to for all that time. 

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After finding so little information out there about RSD and having so many doctors try to treat me who did not know about it, I realized that I was the one who had to teach my caretakers.

Many doctors who are not connected with a research hospital or university do not have the time to stay up-to-date with the latest information on RSD and other chronic illnesses. RSD does not always respond to treatments that relieve other types of chronic pain. Even among RSD patients, there are different responses to treatment.

The condition affects many aspects of the patient's life in varying degrees. For me, the simple things are the toughest. Activities of daily living, personal grooming, and my social and personal life have all been affected. I was not prepared for a catastrophic injury and lost my professional life during the bad days of RSD. I have had to adjust my daily routine because of the difficulty of performing simple tasks. 

I also learned to participate in very limited leisure activities, as I had to find my tolerance levels and work within them. I used to be very athletic, and loved hiking, biking and dancing. I constantly worked out and trained my body. Now I have a limited exercise regimen.

Because of my pain, falls and blackouts, as well as medication side effects, I am no longer able to drive. I need assistance with shopping, cooking, remembering things and traveling. I am in constant need of assistance, which makes traveling, social activities, personal care and holidays more complicated.

I have difficulty sleeping, lack energy and experience stress in my daily life. All of these help the cycle of pain continue.

Over time, I have found that pre-planning for daily events, activities and trips is not something I should do out of convenience; it is something I have to do to be able to function at even a basic capacity.

When I started a daily journal, I found that prayer, having a low-stress lifestyle, and staying hopeful keeps me in a positive place mentally. It also helps me keep my records organized, allowing for better healthcare. I have learned not to sweat the small stuff, to let go of troubles from the past, and look for ways to better my future. With a good team around you, the same is possible for you.

Like most chronic pain conditions, RSD is an invisible disability, which makes it harder for people to “see” your pain. People often have misconceptions about people with disabilities, so I disclose my condition to anyone who will listen, to let them know that RSD exists, and that early detection and proper treatment are important for RSD patients to have any chance of remission.

The more people I educate, the better the chances will be that someone else with RSD will have it easier. I know what I live, I journal it and I want to help others. Maybe a journal will help you.

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Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain FoundationShe is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found at her website. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Should I Tell Someone About My Invisible Illness?

By Barby Ingle, Columnist

It can be tricky deciding when to tell someone about your chronic pain or invisible illness. You can never take back information once it is shared.

If you choose to disclose that you have a chronic condition or disability, you should decide when and how to do it. Take the time to think about different situations and how you wish to handle them.

Many people feel it is not their place to ask about your physical conditions, but knowing about your pain and limitations could help them understand where you are coming from with your thoughts and actions.

I know a chronic pain patient who liked a neighbor and was interested in dating him.  He often helped around her house with handyman projects, and she would see him out on his porch and go out and talk to him. Eventually, he asked her out and they had a great time.

Over the next few months, they had dates scheduled but she ended up canceling a lot of them. She was just in too much pain. He began to think she was not interested in him and started to pull away.

Friends encouraged her to tell him about her medical condition and what she was going through. She did, and he stuck around for a while, but in the end it did not work out. However, they remained friends and it helped her see that she could still have a social life.

If you’re in this or another social situation, you should think about the following when deciding whether to disclose your condition and how it affects you:

  • Are you able to participate in activities using your coping skills and tools?
  • Do you need accommodations?
  • Are you able to perform the activity safely if you choose not to disclose?
  • Do you think the other person will react in a way that’s appropriate for where you are?

If you are not sure about the latter, you may want to wait until you are in a private setting.

If the situation becomes an intimate relationship, it is very important to share even if it means losing that person. It is not fair to them or you to hold that information back.

If your disability is in remission or typically under control, is there a reason to disclose? It is possible that flare-ups may keep you from future activities, so it would be a good thing to disclose ahead of time. The education you give them may also help someone else they meet along the way.

Finally, how will you address misconceptions about your chronic condition when you disclose? Some people do not believe in treating pain with narcotic medications or had a bad experience with someone else in their life with chronic pain.   

Not disclosing is wrong if you are in a situation that can cause others harm. For instance, when getting on a plane, you shouldn’t be sitting in the exit row. If assigned by mistake, notify the flight crew.

When choosing situations and activities where you do not want to disclose your disability, take time to carefully analyze the activities you are able to do and plan accordingly. Remember, you can always reveal more information later as needed.

Invisible Illness: A Blessing or Burden?

(Editor’s note: Pain News Network is pleased to welcome Pat Akerberg as a columnist. Pat is an executive coach and business consultant who suffers from trigeminal neuralgia, a rare facial pain disorder. She shared her story recently in a column.)

By Pat Akerberg, Columnist

Even though we can’t see some things, they still exist nonetheless.  Take imperceptible things like belief, faith, hope, or even the air that we breathe.  Our indirect experience of those things comes from a hidden world.  I suppose we could view their invisibility as either a blessing or a burden.

Sometimes invisibility is a deliberate strategy intended to hide or protect.  I readily count make-up as a blessing designed to hide or conceal.  Military clothing is a tactic borrowed from nature that camouflages for protection. 

The question that I ask is posed in the context of living with invisible chronic illness and/or pain, certainly not felt indirectly or deliberately designed. 

So ask yourself: Is the invisible illness and pain that you live with a blessing or a burden?

I’d have to answer “yes” to both blessing and burden.  It’s not either one or the other for me; it’s  both -- a burden that also offers some blessings.

In the burden category, explaining my neurological disorder to raise awareness and educate others can require energy that I don’t always have.  This is especially true if you have a rare illness like mine that triggers unseen pain when you speak. 

A SCENE FROM THE 1933 MOVIE "THE INVISIBLE MAN"

A SCENE FROM THE 1933 MOVIE "THE INVISIBLE MAN"

It’s a real Catch-22, because emotionally I desire the understanding. However, there’s a high price physically in trying to get some level of it.

Then there are the not always successful attempts to find an effective way of answering the oft dreaded questions, like:

 How are you?

 Are you feeling better now (or yet)?

 You don’t seem to be getting better. Have you thought of trying (fill in the blank)? 

Six years later and my continual test drives of better ways to answer those questions -- that don’t shut down a conversation or open it up to redundant, ill-fitting advice -- still take lots of practice, just like a workout routine. 

High on my burden list would be all the small, insidious ways in which I extend myself to fit in or help others be more comfortable around someone who doesn’t look sick or in pain -- yet won’t get “back to normal” again. 

Sometimes I say yes to invites so as not to disappoint someone close.  I minimize the level or graphic description of pain that I’m in; contort my facial expression into a smile or semi-laugh to keep rapport; or attempt to eat something someone brought, even though it physically pains me to do those things.

Longing for Connections

You’re probably asking, “Why, Pat, do you do them if they can be a burden? “

It’s a fair question. 

The short answer is because they relate to the blessing part of my burden.  Living with invisible chronic pain is a great social isolator; one that prescriptions don’t treat. 

To the contrary, human connection for me serves as a much needed lubricant that primes my psychological and emotional gears to work better.  So I’m motivated to interact in spite of the price.  And, realistically, when I can, I do. And when I can’t, I don’t.   

In talking with my trigeminal neuralgia (TN) friends, we have remarked how it would be easier if our plight and handicaps were visible.  Maybe then, we fantasize, the understanding and compassion that we seek and need would be more forthcoming. 

We have also wondered if our experience of being misunderstood would be different if we had an illness or disease that had a medical label more widely recognized, publicized, or even scary. 

We witness that even the terrifying descriptions used for TN, like “the worst pain known to medical practice” or “the suicide disease” seem to diminish in stature in comparison to those. 

It’s maddening and confounding how something so torturous going on inside of us rarely registers to that extent in our external world. 

Yet, at the same time, these longings of ours do contain the special favor of not attracting the kind of unfavorable attention that we don’t want.  Those who don’t know us aren’t as likely to stare at us, give us those judgmental looks, or jump to conclusions about our health or wellness based solely on what they see. 

So in that sense, I have come to view the invisibility of TN as a mixed blessing that protects me from those hurtful, unwarranted glances.

Having the luxury of being able to control how much information that I want to share about my particular affliction is another blessing I receive from the invisibility of it.  That includes my personal struggles with the burden of it all. 

That’s a freedom of choice that many with visible illnesses, handicaps, and disabilities have to a much lesser degree. 

Thankfully, I am learning to accept the trade-offs involved with this odd paradoxical mix and view them as blessings in disguise.  They are unseen and sincerely felt.

I offer a few of my answers, but in no way profess to have yours.  Sometimes asking a question can serve as a catalyst to search beneath the surface of our particular medical labels. 

One of my favorite professors always challenged his students to “mine for the gold.”    Maybe this question will uncover some important nuggets for you. 

We are still offered the potential to learn from each other and grow in different ways, despite our incapacities and similar challenges.  That’s another blessing in my book. 

Pat Akerberg lives in Florida. Pat is a member of the TNA Facial Pain Association and serves as a moderator for their online support forum. She is also a supporter of the Trigeminal Neuralgia Research Foundation.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.