So today I was watching the show Parenthood. I love that show. For those that haven’t watched it yet but plan to spoiler alert! I was watching the episode where Christina tells the family about her breast cancer and upcoming surgery. And they were all sad, crying, hugging her, loving her and supporting her. They were compassionate and they were just there for her! No questions asked. The doctor she saw was amazing and set a plan in place quickly and they acted immediately. And it just got me thinking why don’t we get the same treatment?
Have you ever noticed that when someone tells another person, family, friend, doctors or complete strangers that they have an illness, like cancer for example, that they are immediately met with love and compassion and understanding and “I’m so sorry”? But when we tell people that we have MCAS or POTS or even EDS that we are met with resistance and questions or “it’s just anxiety or depression or all in your head”. Or we are told we are doing it to ourselves or just looking for attention. We aren’t met with open arms, tears or “I’m so sorry”. No one shows up to help, we don’t get phone calls asking how we are doing, no one wanting to fight this with us! Of course there are exceptions to every rule. Some may be lucky to have that reaction but most do not. And maybe there are some cancer patients that aren’t met with great understanding and love. But many times we hear “at least it isn’t cancer”. Which actually in severe cases some do have a rare form of Mastocytosis cancer. Also there are some rare tumors like pheochromocytoma tumors that are rare, hard to diagnose and hard to find. This is not to take away from cancer patients. It is horrible and heart breaking and terrifying and they deserve all the best drs, and best friends, and best family members and the best support group/communities that they can get. I’ve lost family members to cancer and I’ve watched people close to me suffer from cancer and it is an awful, horrible thing to witness and I can’t imagine what it would be like to go through it.
But my questions is why don’t we deserve that? Those of us with invisible illnesses? Those of us that have a rare disease that is not well understood? Why do we have to be presumed to lie? Why do people think it’s just in our head? Why don’t we get the same understanding, love and compassion?
A little education on POTS. The quality of life and functionality compares to those with COPD or congestive heart failure. Our autonomic nervous system does not function properly and the ANS controls all body functions you don’t have to think about like heart rate, blood pressure, breathing, GI tract, and blood flow. Our heart rate goes up at least 30 bpm just from standing. Some, if not most, peoples heart rate shoots up higher than that just from standing or sitting up. We are almost always some form of light headed. We get dizzy extremely easy and most of us pass out. Our blood cannot make it back to our brains like normal people do. It will pool in our feet and legs instead of returning to our brains and this causes us to not get enough blood to vital organs. When we eat our blood rushes to our stomach for digestion and pulls away from other parts of our body that really need it. Some people are literally bed ridden from this illness. It is a form of dysautinomia and most people have more than one form. Dysautinomia is an umbrella term for the different types of autonomic dysfunction.
MCAS is a spectrum. The most severe being Mastocytosis. I fall in the MCAS category we think. Testing is not really there yet for this disease. There are tests that can be administered to point towards MCAS and there are some that are considered to meet criteria for MCAS. But there is no one test that you do that says yes you have this disease. That along with how sensitive the testing itself is and the specific instructions that need to be followed for these tests make it near impossible to get the diagnosis. They have to be kept at certain temperatures and handled a certain way and most labs and transport persons do not know how to properly store or handle these tests ultimately ruining them. A normal tryptase is not indicative of not having MCAS. It was believed to be so and by some still believed to be so but with further research it is not a reliable test. If you have elevated tryptase then that is indicative there is a MCAS or Mastocytosis issue but having a normal tryptase does not rule either condition out. Have fun talking to drs about that. Many of us experience anaphylaxis. Btw what most don’t know is there is a difference between anaphylaxis and anaphylactic shock. Most medical personnel, as well as people, don’t know there is a difference and therefore do not recognize it. We also experience things like angioedema and hives. We experience throat swelling even without complete throat closing to things like foods, drinks, chemicals, smells etc. We react in so many different ways to so many different things. Things we can react to include but are not limited to:
Sounds crazy right? I know you guys have heard of people that are allergic to everything or allergic to life. Those people are us. Now imagine having reactions to all or even a few of those things and trying to go outside, or go to work or even go to a doctors office where you will be exposed to one of your triggers and will react. But you are expected to live a normal life and it’s all in your head. Imagine having 0 foods and fighting for your life in a hospital with doctors who don’t understand your illness and since they don’t understand they diagnose you with an eating disorder, anxiety and depression. Then they send you to a psych evaluation and they decide you are crazy because they don’t understand. And while you are terrified and panicking because you have now lost all control over what happens to you and you are too weak to fight and they say you are being unruly and shoot you up with a sedative to “calm” you down only this makes you react and they refuse you treatment because you have a panic disorder and it’s all in your head. That can have deadly results. Scary right?? It happens to us often. And even if you are one of the lucky ones that that does not happen to the doctors are refusing things like fluids, FLUIDS! And they are refusing picc lines, tpn, feeding tubes and other literal life saving treatments because they do not believe you. They send you home while you are reacting and you can’t eat or drink and they tell you to follow up with a psychiatrist because you are mentally ill. Can you imagine living that life everyday? Can you imagine being dismissed by drs and being told they don’t know what’s wrong or how to help. Or being degraded by doctors for being a woman and hormonal? Happens a lot to us. Really think about that. I didn’t even cover all of it. I bet you’re thinking “wow there’s more?” I could go on and on.
Ehlers-Danlos Syndrome is a connective tissue disorder. It effects the connective tissues and joints. Most of us suffer sublaxations or dislocations from this disorder. My wrist dislocates on the regular and so does my hip. In pregnancy this can cause complications like premature birth, fast delivery or prolapses. Not to mention all of the pain in the pubic bone area and the hips. Excruciating. But pain is not limited to pregnancy. We experience pain on the regular from this illness. Sometimes it can be so hard to walk that I have to use a wheelchair. I am 29 years old. Imagine the looks I get especially since people can’t see my illness. It’s invisible. We can experience prolapsed arteries, prolapsed bowels, prolapsed uterus etc. We can also hemorrhage which I did with my first pregnancy. Everything becomes stretchy with us. The complications of this illness can be severe and dangerous. It can cause some of us to be brittle and bedridden. And for some of us we have to use aides to move and do normal people things like braces, wheelchairs or walkers. We have to be careful with how we move and be very conscious of any stress we put on our joints/body, the way we bend, turn etc. It’s not easy.
As if just living with one of these illnesses wouldn’t be bad enough there are many of us that have what is known as the trifecta. Which is MCAS, POTS and EDS. Many of us have the trifecta but not all. I am one of those lucky people.
So you see our lives are severely impacted. Many of us are disabled. Many of us have to use special accommodations just to struggle through our everyday life. And we do it with a very limited to no support system. Most of us have to hunt for doctors that truly understand (not every dr that says they understand actually does). We struggle to take care of ourselves most day and many of us have little ones and/or husbands/wives we also have to care for. It takes a lot of rest, self preservation and planning to pull this off. So we miss out on so much. We aren’t physically able to do most things so we lose the social aspect of our lives. Some of us our families can’t handle it or don’t believe us so they leave. We spend everyday fighting our own bodies and usually the people (to include drs) around us. It’s exhausting to say the least and most of us also battle fatigue. Fatigue is not the same as exhaustion. Fatigue is something that no matter how much sleep or rest you get you never recover.
We are not given sympathy, empathy or compassion. No one greets us with open arms, hugs and tears when we tell them about our illnesses. We don’t get understanding or love. We get questioned and accused. And isolated. And it needs to stop. We need awareness! We need compassion. We need no judgement! Just because it’s invisible does not mean it’s not real! Just because you haven’t heard of it does not mean we are not suffering. It means we need you the most! It means we need awareness out there so we can stop being harrassed for using handicap placards, wheelchairs, walkers or motorized carts at grocery stores. Or when we use the handicapped stalls in the bathroom. Yes people abuse the system but that DOES NOT mean everyone does. And quite frankly that’s not for you to decide. There is no way for you to know just by looking at someone in public. And just because you form your own opinion doesn’t make it right.
So here is to awareness! Here is to compassion. Here is to understanding. Here is to empathy. Here is to humanity for all. We with invisible and rare conditions deserve just as much as others with well known and noticable illnesses.
Love to all!
#MCASAwareness #POTSAwareness #EDSAwareness #ChronicIllnessAwareness #InvisibleIllnessAwareness