I was messaging with my therapist recently, frustrated with the challenge of trying to find a treating pain management specialist under my new insurance. Sharing with her how angry I’ve been in recent years after being brushed aside by more than a dozen physicians I’ve looked to for help (messaging because speaking on the phone or seeing my therapist in person is out of the question for me). She rationally offered advice like, “Did you ask your last doctor for a referral for a new pain doctor?” And, “Have you tried seeing any specialists for your conditions? Why are you in so much pain? How about taking more pain medication? No one should be suffering like you are.”
Why did her rational, reasonable solutions make me want to scream?! Maybe because after over a decade of chronic illness, I know that her innocent view of medical care is like the ABC’s and I’m working off of XYZ, but the issues we face concerning our health care should not be so complicated. We are ill, and so many of us aren’t able to go so far out of our way to find help. It really should be so much more simple to find a good treating doctor. And when it isn’t, we fall through the cracks. We get worse. And the worse we get, the worse we get.
When doctors are knowledgeable about your condition and how to offer solutions, they will. When the options available are helping you manage, and the practice is making money off of the treatments offered, everyone is content. However, if your condition happens to worsen outside of the doctor’s comfort level, you might find yourself in a pickle. Your records show that you’ve tried so many different treatments for condition A, however because you now have conditons A#%@, other practices are less willing to see you. You wear a scarlet letter “C” on your records for COMPLEX, and from then on, you seem to be tucked into the bottom drawer of society.
This is happening to so many patients across the country. The new CDC guidelines didn’t help by limiting pain medication for chronic pain management, and neither did Obamacare. But, this is not a new problem and cannot be solely blamed on new government protocols, even if the current “solutions” have only pushed those of us with serious ongoing health needs further under society’s invisible rug- making us more invisible. Who sees to our care when we become “more complex?” As it stands, the more simple your case= the better your care. The more complex, rare, or worse off you are= the worse off your care is likely to become.
People who could have fully recovered and started back to work if they had been deemed worthy of attention earlier on, instead, further decline physically, mentally, and economically, and into a state of no return, forcing more and more people onto disability and social security- a status which statistically is difficult to recover from once you start.
Meet Kayla. Kayla is near middle aged and was diagnosed just after her symptoms began. She was set up with a team of specialists by her Primary Care Doctor. Kayla has had to change her life around since her diagnosis and feels so much loss for the things she once loved to do. She wishes there were a cure, but seeing her doctors regularly and trying new treatments reminds her there is hope. She is managing her condition by resting at home much of the time and has been able to continue mothering and finding support in her husband. She continues to work only part time now, and in her rest/recovery time, she has started to do what she always wanted to…write a book.
Meet Jonathan. Jonathan is in his 20’s and saw several specialists soon after his symptoms began, but no diagnosis was made. He spent years asking various doctors what might be wrong, but he was told he seemed young and healthy and the few tests they ran came back normal. Over time, his health so interfered with his work that he lost his job. His wife thought he might be faking his disorder to get out of his responsibilities and eventually left him, taking the their newborn. He couldn’t pay the bills any longer and lost the home. Finally, after years of illness, Jonathan is diagnosed, but his original condition left untreated for so long has caused a few other complications which are likely now permanent. With his diagnosis, he can now apply for disability, but he will likely never be able to work again or get back on his feet- financially or physically.
You can see in the best case scenario, how much hope a good doctor can offer. Even in Kayla’s case, everything changes, and we need the help of reliable physicians because we can’t do it on our own.
I can tell you that this happens to those with money, those with the best private insurance, this happens to those lucky enough to have family who can advocate for us, it happens to those who can advocate for themselves, it’s happening to the young and old, it happens to those with government insurance, it happens to people who can’t afford the special doctors, and it is especially happening to people whose health suddenly takes a sharp turn so that they can no longer advocate on their own behalf. People are slipping through the cracks, and there are more of us with chronic illnesses and rare diseases now than ever before!
You think it’s the emergency of your life, and you always imagine doctors being there for just this time, but you are made to feel that a chronically ill person’s emergencies aren’t quite as worth while. Slowly but surely, like a Polaroid picture’s image emerges, you get the picture that your life isn’t worth while either. Many people like myself won’t even call an ambulance if they believe it’s a life or death emergency. We’ve been down the hospital road too many times, and believe from experience that there is no hope in that big white building- not for so many…too many of us.
If they keep tucking the sickest people away in the bottom drawer of society, if they keep us under wraps, if they don’t allow us the medication and doctors we need to survive, and if they continue to legalize euthanasia in the U.S., then maybe we’ll all just disappear, and leave them alone, right?
Wrong! They aren’t shutting us down, they’re starving us out!
We might not be able to picket the CDC, or storm the halls of Congress, or hold a sit-in demonstration inside of a hospital building, but social media can’t contain us. We can write our senators, make videos, sound clips, share our stories on Facebook, become ambassadors for rare disease foundations, get involved with patient advocacy groups online, or guest write for blogs from our couches, wheelchairs and hospital beds. Maybe we can’t go on the walks to raise money for a cure, but we can help organize them! And don’t forget, our stories are the most powerful weapons we have to make change.
You are the same person you always were; your health changing is not your fault. Your worth is not defined by how well your legs work, or if you were able to eat something solid this month, or if a doctor deems your medical file “worthy” by looking at the papers inside. You are not your file. And I know I’ve caught some slack for saying this- but you are not your body either. You may not be able to scream, but we need your voice! Your story is unique, and will inspire someone else to keep going, and move another to vote differently.
Even though it’s not your job to be an inspiration… you already are. You matter.
Email firstname.lastname@example.org if you would like to share your story or to ask how you can get involved with advocacy programs online.
Even if it’s a terrible diagnosis, you crave even the worst titles, just to have a name. Just to put a label on what your body is experiencing. You dream of a diagnosis for the madness eating away at your body and your life.
You want to scream when test after test comes back normal, appointment after appointment ends with no answers, and you wonder how much longer your body will hold out like this. Each frustrated physician and specialist is at a loss and they know anything more they try could likely only make you worse. So one by one, they set you free into the river of uncertainty to face the un-named beasts in you alone– ALONE.
Instead of one confirmed diagnosis, you have a list of conditions which are more like guesses your doctors have labeled your symptoms with. “Chronic Migraine” for example, or “Vertigo.” You know they are only symptoms of a larger, more pertinent illness no one can pinpoint.
When I was 22, I was lucky enough to be diagnosed correctly and immediately with a terrible chronic pain condition called RSD/CRPS. The early diagnosis didn’t help me find remission, but I know that being diagnosed helped me gain some stability. Instead of blaming my body, instead of staying up nights searching online to figure out what might be wrong with me, instead of searching far and wide to find the answer to the screaming question disabling me, I could turn to knowledgeable doctors or helpful research online. I could reach out to support groups with the name of my condition. I could blame my disease, and so could my family.
At 28, I had a different experience. After spinal cord damage from a procedure, and a terrible reaction to the experimental medication injected, I became more ill than I have ever been… and I’ve been undiagnosable since. Everything was different this time. Tests were normal, doctors gave up quickly and treated me like they were afraid of me. The chronic pain community I leaned on for so many years prior were also at a loss. I felt so alone, and it seemed that my body was trying to kill me.
Even if it’s a terrible diagnosis, having an answer, having a community, having a list of symptoms, expectations, FDA approved treatments- is so validating and valuable while you are suffering so fiercely. You can finally give a name to the monster bullying you, instead of constantly blaming your own body.
When you have a diagnosis, those who love you can advocate on your behalf. They can organize fundraisers and walks, they can hate the illness inside of you. But when there is no name, people doubt you. It doesn’t matter how sick you are, if you can’t identify why you are unable to move or speak or eat, or leave your bed… people wonder about your sanity. They wonder about your will and your strength.
They’ll say you haven’t done enough to get well. They’ll say there is more you could do, and you are just unwilling. On the flip side, the same people will later whisper that you became obsessed with your illness and seeking out treatments- that it consumed you. Yes, you are trying to save your own life. And your life is worth fighting for!!! Giving up is not an option!!! Be proud you are so aggressive. Anyone who isn’t aggressive on your behalf should be ashamed- not you.
I have come to accept that my diagnosis is “Complex” and may in fact forever be “Undiagnosable.” Managing the nameless, and finding doctors who are willing to try and do the same is my path now.
We do have some labels that work to help us find each other, support one another, and build community. We can fight together as warriors with a united cause. We can be identified by “chronically ill”, “rare disease”, and “spoonie.”
We are undiagnosable, for now, our illnesses are unidentifiable, but we are not invisible!
On the morning of November 6th, in a suburb just north of Atlanta, GA, the students and teachers of Woodstock Elementary School arrived wearing orange in support of individuals living with Complex Regional Pain Syndrome/RSD. “It was a sea of orange today,” said Principal Kim Montalbano, who organized the awareness event.
Each November for CRPS/RSD Awareness month, people around the world participate in Color the World Orange, and this year, for the first time, the students and faculty of Woodstock Elementary School joined the cause!
My mother, a long-time teacher at W.E.S. was overwhelmed by the support shown to people living with severe daily pain and families affected by the debilitating neurological disorder, RSD/CRPS. When she arrived to work that morning, my mother was excited that the children in her own classroom would be sporting orange; instead however, she saw orange everywhere she looked! “It was a very emotional moment when I realized the entire school was supporting you today,” she told me that evening with tears in her eyes.
Many of my mother’s colleagues know that I have grown more disabled over the years, however she was encouraged to share my story in more detail on the 6th along with information on the condition that started it all:
I sprained my ankle when I was a healthy, active and focused 22-year-old; Complex Regional Pain Syndrome/RSD began immediately following the injury. The constant pain has spread to other parts of my body over the last 11 years and I now have several other disabling chronic illnesses. They say that RSD/CRPS is the most painful condition- more painful than childbirth or amputation, but people like myself don’t get a break from the pain. I have traveled to see specialists, I have stayed in hospitals like Emory and Mayo among others, I have utilized western medicine, alternative, and holistic type treatments and therapies. Because of the enhanced awareness in recent years, new treatments for RSD/CRPS are being developed so there is always hope for remission! Anyone can contract RSD/CRPS from a minor injury, but research shows taking vitamin C after sprain, fracture or surgery will reduce your chances by helping your nerves heal. It is an extremely difficult condition to manage, but a loving family, faith, online support groups, and doctors who truly care make a world of difference for people like myself.
A few of my mother’s co-workers shared that they struggle with their own chronic pain conditions and felt that no one understood what they lived with on a daily basis. A mother of one of the students wrote a note to my mom saying that she has had CRPS/RSD for years and has always felt very alone in her pain. She was so overwhelmed with the support of the entire school and was extremely grateful it was being recognized so near her home. She thanked my mother specifically for educating her child’s class on RSD and extended a special thank you to Principal Montalbano for organizing such a meaningful awareness event.
Several of the students tried to understand why wearing orange would make a difference. Some were disturbed by the idea of living every day in pain. One student asked my mother, “Can’t your daughter just take medicine to feel better?” Another asked his teacher how his orange t-shirt would help people in pain recover. His teacher explained that it wouldn’t, but for people like my mother and myself, his support would be “a very big deal.” He then felt compelled to run down to my mother’s classroom to show her his orange shirt, and to say, “I hope your daughter feels better soon.”
Because of this incredible awareness event at W.E.S., classes upon classes of children know what RSD is. Their parents, who read the memo and found them something orange to wear that day, are now familiar with the term “RSD”. Faculty who helped explain the illness all day will recognize it whenever they hear the term again. The next time a person they care for is diagnosed, it won’t seem like the most foreign illness on the planet and they will know treatment must be sought out immediately.
When I shared pictures of the children wearing orange to my Facebook timeline, my friends were so touched and inspired by this amazing gift of support. We all feel incredibly uplifted and deeply moved by the entire school of Woodstock Elementary. On behalf of myself, my family, and my extended family of survivors living with indescribable pain, thank you W.E.S. for your support, your kindness, and for raising awareness for Complex Regional Pain Syndrome/RSD.
I’m not Jeff Foxworthy but some things about being health impaired are so ridiculous, we might as well try to laugh. Here are a few I thought of along with some additions from my Spoonie friends. Please share yours in the comments section for Invisible Illness Awareness Week!
You Know You’re a Spoonie When:
-You have more cute socks and pajamas than sexy lingerie’ and heels.
-You are on a first name basis with all of the local pharmacists.
-Your family uses YOU as their excuse for getting out of things they don’t want to do with other people.
-If a stranger comes to your front door, you just hide until they go away.
-You have more salts in your bathroom than the DMV road crews in the winter.
-Your spouse/partner fills your meds for you as a romantic gesture of his/her affection (goodbye flowers!).
-You have become mysteriously artsy/crafty over time since diagnosis (was increased creativity one of your symptoms?).
-Your doctors and favorite nurses are on your Christmas card list.
-You know where all the elevators are wherever you go, yet somehow they always end up super far away from your actual destination (what is that about anyway??).
-Your pets seem to have a better understanding about how you are feeling than anyone else.
-Your loved ones have a favorite joke about your disability that makes you laugh. When they say it in public, people think your loved ones are horrible.
-You have more hair in your bed, in the drain, and in your brush today than is actually on your head!
-You start to talk to your Spoonie friends online more than you talk to your friends and family.
-You’ve learned so much about medicine that your doctors talk to you like a colleague instead of a patient.
-You’ve developed heightened super-sonic senses. You’re sure you are a super hero and keep looking for a lit up spoon signal outside. (To the sick cave!)
From my Spoonie friends: You know you’re a Spoonie When…
-All the people who work at the drug store and pharmacy know you and your family by name. -Molly Williams
-Whenever you are in public people stare. You are starting to get a complex that you have grown extremely good looking. inspired by –Living Life Beyond Disability
-You joke about going to see your “drug dealer” a.k.a. your pharmacist. -April Hughs
-When I rate my pain 1-10 and 7 means I’m having a GOOD day. -Keely Blackburn
-You know all the different medications and their side effects. -Julie Pierpoint
-You have to bite your tongue when a friend keeps complaining about his/her allergies. inspired by –Sick and Sick of it
-You talk to your doctors, nurses, and pharmacists more than you talk to your own family! -Allisin Wonderland Hatfield
-Your deaf and blind dog thinks your crutches are trying to attack him! -Tegan Bert
-You go to hand your pharmacist the prescription card and she says “Nah, I remember you have one of those.” -Christine Brannon-Miles
-You make fun of the television commercials about medications that “help” symptoms like yours. inspired by –Finding Out Fibro
-When your mum says you will never get a flu because all of your meds will probably knock it out of your system first. -Marika Dolinski
-You use ferocious animals and monsters to represent your illness. –inspired by Elle and the Auto Gnome
-You are so tired of explaining what’s wrong with you that when anyone asks, you distract them by responding: “where did you get your hair cut?” or “do you garden?” -Melanie Barker
What are yours?
If you enjoyed the above poster or want to know what a “Spoonie” is, read the article it was based on: “10,000 Spoons, If Only! Why the Chronically Ill Love Spoons”
This article was featured on InvisibleIllnessWeek.com 2014. Sharing again here in honor of Invisible Illness Week 2015.
~In Her Shoes~
She asked me in a nice voice if I would wear her shoes.
It wasn’t the best choice, but how could I refuse?
The moment they slipped on, I swear I heard a crack.
Then something within me sharply turned to black.
The shoes no longer held me up as I fell to my knees.
I could not bear the weight of my dear friend’s disease.
She got down on the floor with me and held me for a while.
She put the shoes back on her feet and then she forced a smile.
I don’t know how she wears those shoes!
She must have so much strength.
I’ll never understand; I wish I could help her bear the weight.
This was written in honor of all of the women who live with invisible illnesses and invisible pain. May they have friends who try to understand what they face.
Poem featured on The #Spoonie Daily E-Magazine