If you’ve found yourself involved in the Spoonie community whether that be through support groups, forums, Facebook, ect you might notice we can actually be a rather social bunch.When we have found others like us and a means to connect within our bodies limitations we are a force to recon with!
Discussion is such an important part of the human experience. Even as an innate “loner” I know the drive to connect to others. For many Spoonies our online communities are where we can surround ourselves with people operating on the same wavelength so to speak but it is important to remember the world operating outside our safe circle. So here we shall begin with a recently circulating article where I wish to elaborate on some points.
1. “I’d be more than happy to educate you if you ask about [my condition] rather than question its existence.” —Katie DeMore
This is an example of “ignorance is bliss” if only it were blissful for us. Just because you haven’t heard of a disease or disorder does not mean it doesn’t exist. This is especially frustrating for us because often we have gone years or decades seeing doctors who were also ignorant of our disorders existence. When you have fought your body and the medical system so hard for so long by the time you get a diagnosis you’ve collected enough information to debate with the top specialists in the field and match them. Its cruel and invalidating to dismiss this experience by declaring our disorder doesn’t exist.
More often than not if you ask we are more than willing to answer whatever questions you have to the best of our ability.
2. “Most doctors have never heard or seen a patient with the disease.” —Nancy Reeder Martin
As stated above many of us go undiagnosed/misdiagnosed for prolonged periods of time. We not only suffer from a constellation of symptoms with no answers but the professionals everyone tells us to turn to are unable to provide them. Having to say “I don’t know” as your symptoms cripple your life is a cruel sentence to live out.
3. “Smiling doesn’t mean I’m suddenly healed. It just means I’m choosing to stay as positive through the pain as possible. —Evan Mundine
When your symptoms persist and sometimes never stop you develop a new normal it doesn’t mean we are ok it means we are adapting to living with it.
4. “Do not give advice to people with rare diseases. I know more about my disease than my own doctor does so please think before attempting to give advice.” —Brittney Peebles
Pretty self explanatory. If you have a disorder that only 1 in 250,000 people in the world has you learn you cant depend on most medical staff to be competent in treating you. Its imperative you know your disorder better than they do so if you think your telling us something new or different the chances are slim.
5. “People who hear you have a condition should never say, ‘Well at least it’s not cancer.’” —Cheryl Olenczak
This is among the WORST things you could say to a person with chronic illness. Im not unsympathetic to cancer its a horrible disease. Ive lost friends, family, and experienced plenty of long months/years of worry watching people i care about going through treatments and surgeries. The difference is cancer has a prognosis, cancer has an end one way or the other. Remission or death it sounds harsh but the truth of chronic illness is our prognosis is fairly blank and all we can be sure of is a long, painful, and exhausting road with little to no effective treatment to offer possibly for multiple decades. So please never say this phrase.
6. “They are only ‘rare’ until they happen to you or a loved one.” —Bob Longhorn-Longhorn
When that disorder that never made an appearance on the evening news or an episode of HOUSE strikes your spouse, child, sibling, or parent you don’t care its “rare” because its now your everything.
7. “Just because what you’re experiencing doesn’t fit into an easily diagnosable box doesn’t mean you should be easily dismissed and overlooked.” —Megan Wirts
This is a huge part of the reason for living undiagnosed. If your symptoms don’t fit in the neat summarized checklist of a disorder its often dismissed from the list of possibilities before your ever fully evaluated.
8. “Fundraising is a big deal because government funding is scarce or nonexistent.” —Rebecca Brewster
Rare disorders are orphan disorders. Diabetes is a disorder nearly anyone has a passing familiarity with its prevalent enough to garner research dollars and drug funding. Prevalent means these investors will see a return as people try these therapies and drugs to better manage their disorders. Rare disorders have no such luxury we as patients and caregivers have to fight for the acknowledgment and then the funding.
9. “I wish people wouldn’t say , ‘Ahhh, I hope you feel better soon’ like it’s the flu! —Lauri Morris
While this is a well meaning sentiment chronic illnesses by definition will not get better or resolve completely. I we are lucky we may find a good management strategy or experience a remission but we will live with this till our death. There are plenty of more factually accurate responses such as “I hope you can get some rest”, “I hope your flare ends quickly”, “Im wishing you the best in coping with this”, and many others out there such as on Pinterest.
10. “Nothing about rare diseases is simple — not the diagnosis, not the daily care, not the long term. If you really want to know about my child, it’s not a one sentence answer.” —Elizabeth Grehl Breden
Well said! If you ask about our lives there is no answer that is both short and accurate.
11. “Physicians need to understand that we likely know more about our disease than they do. They need to actually listen to us! Be compassionate and understanding.” —Renee Walchak L’Ecuyer
I like to call this one Doctor Deity Syndrome. As educated professionals in their field doctors are used to being in a position of power and being deferred to. This doesn’t work when you have a rare disorder, our experience as a patient is far greater than what they can google about our diagnosis. If Ive had to spell it out for you to look it up stop treating me as if I am he inferior mind of the subject please.
12. “It feels incredibly isolating to want to help your child and not be able to because even the doctors don’t know what’s wrong. To not have someone who understands because there is nobody like your child. To not be able to have a treatment plan because there is no diagnosis.” —Susie Stretton
This is the disheartening part of the situation. Its hard to have hope or formulate a plan when your prognosis is unknown. There simply isn’t a large enough sample of patients to draw many solid conclusions of what your life could be like.
13. “People can just be a good friend and listen and be there for you; they don’t have to try to relate by saying they know someone who has the same thing. Hence the word ‘rare.’” —Jill Ritchey
We know we are the zebra on a horse farm we don’t expect everyone in our life to be able to relate. This doesn’t mean we don’t need you! This isnt an excuse to abandon us when you don’t understand. We have “normal people problems” too we get dumped, our bosses can suck, we fight with our family. Even when we confide in you about medical issues we need a trusted ear more than someone who can empathize.
14. “Sometimes you have a name that everyone knows (i.e. epilepsy), but a rare presentation of it (i.e. Lennox Gastaut syndrome) that means you don’t qualify for studies and the meds don’t work. It’s a terribly isolating and frustrating place to be in medically, and the generic name doesn’t give the correct picture to the public.” —Kelly Shaughnessy Morris
You can still be an orphan of a known disorder. Whether that be by an unusual variation or the severity of symptoms.
15. “‘One in a million’ means it’s possible. And those ‘ones’ need to count.” —Hailey Remigio
Which is why we we rally and relish in finding those others like us.
16. “You may never really get a full diagnosis and/or prognosis.” —Jessica Taylor
A truth of life with chronic illness. We are the lab rats figuring it out as we go. Often we inform our doctors more than they can inform us.
17. “I wish people who can’t see your illness wouldn’t judge.” —Dawn Dawneedoo Frascati
Not every disorder or disability is visible. That “normal” looking person waking away from the handicap spot isn’t a scammer, please don’t assume their disability is the personality flaw of false entitlement.
18. “It can’t be fixed by a simple visit to the doctor. There isn’t a drug or something that can be given to cure it. It’s always there and without research it always will be.” —Sylvia Marsden
We live a 24/7 365 day a year job of battling our body we never get a break, there is no shift change to bring relief, it is always there to some degree.
19. “To be able to talk to and meet fellow patients and have a conversation about our disorder without having to try to explain what it is is extremely valuable.” —Neil Smith
As they say “Me too” can be the most powerful words you’ll ever hear.
20. “Some of your coworkers, neighbors and friends who appear to be living ‘normal’ productive lives are also living with rare disorders. I bet most people know (often without realizing it) at least one person who lives with a rare disorder.” —Lisa McClellan Lucius
Again not all suffering is visible.
21. “We enjoy the confused look on [your] faces when we tell [you] the name of our illness/es! ‘Neuromye-what?!’ —Helen Lear
Admittedly this is amusing. Small compensation but we take it where we can get it.
22. “Just because a doctor/pediatrician/ER staff hasn’t heard of a disorder doesn’t mean it doesn’t exist.” —Brittany Lazechko Alley
There are millions of diagnosible disorders with minuscule numbers of occurrences. This is why they call us Zebras not Unicorns.
23. “Our caregivers go through so many sacrifices caring for us! It’s a thankless job and I know I don’t always say ‘thank you,’ but I would not be where I am without them! —Mary Lou Briggs
We can get wrapped up in our symptoms and coping forgetting others who take the time and effort to help us don’t have that same 24/7 job. We don’t mean to be ungrateful so please be patient with us.
24. “You will do and learn things you never thought possible. ‘Hope’ means so much more since sometimes that is all you have.” —Nicole Vallier
There are so many things you think “I could never live with that!” until you have no other choice. As a personal example when I was 8 years old and my first serious symptoms started I couldn’t imagine surviving a life where most of the time im on the verge of vomiting. Where I do vomit 5, 15, 30 times a day and every time I pick myself up cope the best I can getting on with my day most often without ever going to the emergency room or speaking to a doctor about it. Yet here I am and that has been my new normal for over 8 years, despite various treatment and medications this is my life.
Now if you’ve made it through this post whether a “Spoonie” or a “Normie” I hope these thoughts stick with you leaving you more open to others in this world we share and the possibility of expanding your personal experiences.