5 struggles of living with POTS, Fibromyalgia and other Invisible Illnesses




     Lets start by defining what a chronic illness and an invisible illness are. A chronic illness is one lasting 3 months or more by the definition of the U.S. National Center for Health Statistics. Chronic illnesses generally cannot be prevented by vaccines or cured by medication, nor do they just disappear. An invisible illness are chronic illnesses and conditions that are not outwardly visible. In the United States, 96% of people with chronic medical conditions show no outward signs of their illness, and 10% experience symptoms that are considered disabling. So unlike a chronic illness things like viruses, infections, broken bones and even cancer in many cases are curable meaning the patient is able to go back to living their life as they did before they feel ill in most cases. 


     I personally have fibromyalgia and postural orthostatic tachycardia syndrome(POTS). Fibromyalgia is a chronic disorder characterized by widespread musculoskeletal pain, fatigue, and tenderness in localized areas. POTS is one of a group of disorders that have orthostatic intolerance (OI) as their primary symptom. OI describes a condition in which an excessively reduced volume of blood returns to the heart after an individual stands up from a lying down position. Now that we have all of the definitions out of the way lets get into the daily life struggles a person with an invisible chronic illness encounters using someecards for humor.


1. Being Stuck at Home or on Bed Rest

     Everyone seems to have this idea in their head that we have 'the good life'. We 'get' to stay at home all day doing whatever we please not 'having' to work. I mean how could that be bad at all, its every ones dream right? A life playing video games, watching TV, cooking great food, being able to do whatever you want whenever you want. Sadly that's not exactly how it works. We don't 'get' to stay at home or in bed all day we are forced to by pain and debilitating side effects. We have migraines, all over pain, fainting, dizziness, dislocations, fatigue, blackouts, brain fog, palpitations, chest pain, nausea, vomiting etc. We are not doing whatever we want as we are too sick most days to even get out of bed and feed ourselves. We have had to accept that we can no longer take care of ourselves and need someone to help us which brings on feelings of humiliation and failure. 
     
     Its also extremely false that we don't want to work and go to school and are 'just being lazy'. If we are at the point where our doctors disable us, they did it for a good reason and we are no longer able to work. Trust me it is incredibly heartbreaking to find out that you can no longer provide for yourself and those who depend on you. Not being able to work also means not being able to go out and enjoy life as you once were able to. Imagine that you are now no longer able to go to the club, go shopping, hang out with friends, go to college or work. You feel like a failure, all of your future plans just came crashing down because your body decided to fail you and there is nothing you can do about it. It causes depression, anxiety, stress and in the worst case scenario, suicide. RIP to all those we have lost to suicide from the feelings of guilt and harsh words.



2. Friends and Going Out

     We love our friends and we hate having to cancel plans last minute because our body decided to have a flare up meaning our symptoms hit us full force.  We didn't cancel because we don't like you or because we made other plans. We enjoy our time with you and look forwards to being a 'normal' person every once in awhile. We may not be able to participate in everything you'd like to do but we would love it if you could compromise or modify the outing to include us. We are still the same person we were before we got sick personality wise, the only difference is we now have limitations and have to modify the way we live our lives. We are still fun, loving, caring and will be there for you. Though we are a lot wiser, stronger and can giver you some pretty great medical advice. Many people have already departed from our lives because they see it as being too difficult to be friends with someone who is sick full time but for those who stick around we thank you and love you dearly for everything you do.


3.  Unless You're a Doctor, Keep the 'Medical Advice' to Yourself

     We know you mean good, we really really do but we've heard it all and we've tried it all. Your mothers, best friend's, aunt may have had a backache once who tried essential oils that worked wonders. Maybe you read somewhere that the medication we take can cause cancer, kidney disease or some other terrible side effect and we shouldn't take it anymore. Then there was that once time your friend tried this supplement along with this special diet and now she no longer has anymore aches or pains. You also read an article about our illness where a woman was cured by this magical cream. This is great news for them however, we have a chronic illness, key word being chronic meaning there is no magic pill, cream, diet, supplement or anything else that can cure us. We appreciate that you are trying to help but trust me we have tried EVERYTHING under the sun to ease our symptoms. We work with our doctors and communicate with other patients about what works and what doesn't. We got this covered! Scouts honor! It gets old fast hearing people who have no medical degree or do not have our illness pushing us to try ridiculous things to 'cure' us, then in most cases getting upset when we refuse. While we welcome your help, we would prefer it in a different way.



4. Live by the Golden Rule

     If you don't have anything nice to say don't say anything at all. A simple saying we were all taught as children and should continue to follow as adults. As a person with an invisible illness I deal with ignorance on a near daily basis and regardless of how many times I hear something it still hurts. 

"But you don't look sick..."
"It must be nice not having to go to work/school!"
"It will get better, it's not forever."
"it's all in your head. It's just anxiety/depression/stress."
"Everyone gets tired."
"I feel like that sometimes too so I know how you feel."
"You're to young to be this sick."
"You're faking it to get out of school/work."

     These are only a few of the things we hear on a daily basis from friends, family and believe it or not, our very own doctors. We have to deal with our chronic illness and that is a 24/7 365 job in itself so adding on the stress of people invalidating our illness makes life incredibly hard. It causes extra stress and stress causes flare ups making us even more sick than normal. We want people to be careful of what they says we are already going through the cycle of grief. We lost our old life when we became sick, we feel guilty, angry, depressed, anxious and so many other feelings all at once. The last thing we need is stress from people giving us a hard time. What we do need is your support, simply showing us that your care by asking how we are doing is huge to us. We want to know we are not alone in our battle and that people care.





5. Dating

     Dating while chronically ill is an interesting experience to say the least. Many of us use online dating sites as going out often is a problem due to the fatigue, pain and other symptoms associated with our chronic illness(es). From my experiences over the past few years its been hard to find a man who is willing to look past the fact that I am sick. It always starts out great, we start talking and end up liking each other. Maybe go on a few dates and then its time to drop the bomb which usually goes a little something like this...

Me: "I have something I need to tell you"
Him: worried stare, "okay?"
Me: "I have multiple chronic illnesses, I have Fibromyalgia and Postural Orthostatic Tachycardia Syndrome."
Him: "oh I'm sorry that sounds horrible" eventually stops talking to me as a potential girlfriend

     Just because we are sick does not mean we are undateable invalids. (I bolded that sentence because it is of utmost importance.) We are intelligent, beautiful, kind, caring, strong people who's personality doesn't change due to our illness. Yes we may need to modify some things in our lives and might not be able to do everything we used to but we are some pretty awesome people. Don't let the words chronically ill scare you away from a wonderful relationship with an awesome person. We have gone through hell and back so you know we can get through relationship troubles no problem. Some of the best people I've met were those with chronic illnesses. Being sick forces you to have a positive outlook on life and stay happy through adversity.

     For my fellow spoonies, never give up hope because there are guys and gals out there who will love you for you and realize that your illness is a part of you. They will help take care of you and make sure you're always okay. I was lucky enough to find one in my current boyfriend. It took years to find him but its definitely possible. So what happens when you find the guy/gal that's willing to be with you regardless of your illness? You explain to them that its not going to be easy, it will be tough at times. Educate them on your symptoms, what you can and can't do, what to do in certain situations and help them be able to help you. Make them a care givers guide to make it easy for them to help in emergency situations. Don't get frustrated if they aren't catching on fast its a whole new world to them.



Always remember, just because you're chronically ill doesn't mean you're a failure. It means quite the opposite, you are a SURVIVOR and you are STRONG. Stay chronically awesome my fellow spoonies.

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