I’ve had a few people say to me “at least you don’t have cancer” including my husband.
I’m so glad I don’t have cancer, it’s an evil disease that doesn’t care who it attacks, young or old. Nearly everyone knows someone with cancer. Getting a diagnosis feels like being given a death sentence. Even those that survive never really recover.
The treatment for cancer is brutal with many side effects. Sometimes it works, sometimes it doesn’t. It attacks different parts of the bodies so all cancers are different.
Cancer has taken far too many people too soon, destroying families. Survivors live with the knowledge that it can strike again at any time. Survivors also often suffer with Post Traumatic Stress Syndrome.
Cancer took my Mum, two of my sister-in-laws and my nephew. Cancer wrecked the first few years of my friend’s little boy’s life. I have friends with cancer. I hate cancer, I really do.
I’m glad I don’t have cancer.
At Least You Don’t Have Stiff Person Syndrome Plus PERM
I’ve never said to anyone ‘at least you don’t have Stiff Person Syndrome plus PERM.’ Probably because the answer would be like ‘huh?’
When you say cancer, everybody knows what you mean. They know that it’s awful and it can kill, and often does. They know how dreadful the treatments are. Most people know someone with cancer, it’s so common.
Stiff Person Syndrome plus PERM (SPS+) is incredibly rare. Less than one million people in the entire world have it. It can take around seven years to diagnose and most Doctors have never heard of it. It can also be a sign of cancer.
SPS+is so rare no-one knows how to treat it, not even the specialists. Drugs have been used and some found useful. Most drugs are not prescribed because the condition is so rare they are not registered for it.
The drugs I take for my SPS+ are classified so my partner has to go to a regular chemist to pick them up where they know him. If he has to go somewhere else he needs to show identification.
My drugs have many side effects that can make me extremely tired, sick and dizzy. They can also affect my heart and memory.
I go to hospital for treatment every month. Not in stages, but every month for two years now and probably for as long as I’m alive. I don’t get tests to see if it’s worked because it can’t cure me, just help me from getting worse, and maybe make life a little easier for me. The treatment can cause headaches, flushing, fever, chills, fatigue, nausea, diarrhea, blood pressure changes and tachycardia. It can also cause acute renal failure and thromboembolic events as well as aseptic meningitis. (which I’ve already had.)
I have pain all the time, I can’t walk without aid, and then only for very short periods. I get vertigo and have absence seizures. Most of the time I just want to sleep. I have spasms that can affect any part of my body and that can be so severe they break bones. (So far, just ribs for me.) The spasms can also affect internal organs, including my heart and lungs. Each severe spasm feels like I’m dying.
There is no cure, there is no proven treatment. Most people have never heard of it. I’m in pain constantly, I could die at any time and my medication has just as many side affects as the ailments it’s supposed to be treating.
Yes, I’m lucky I don’t have cancer.
And, you are so lucky you don’t have SPS+
Wow! Such a strongly written post! It is something to think about.
I wouldn’t wish cancer or SPS+ on anyone. They are both awful. x
Me neither Kim, or anything else that hurts xx
Such a thought provoking post Anne! I think any illness is unpleasant and you do so well to try and deal with SPS even on your bad days. You are a true inspiration. xx #MMBC
Thank you Jayne, I try to be positive, but some days I just have to let it all out xx
Very true . Life isn’t fair . None of us know what lies ahead . There are many many awful life changing illnesses and diseases which slowly turn the person into an active brain with a body that doesn’t respond like MS for example . People who have never known what it’s like to have good health and lead normal lives … maybe people don’t understand and can only think of what ails them at the time . But you are spreading awareness and hopefully more people will be tactful and more aware for the future x ❤️
I have certainly changed my way of thinking about people who are hurting all the time. When I was healthy I just couldn’t get my head around it. But no-one knows what lies ahead. xx
Oh, I’m so sorry. The things people say. #MMBC
People are werid when they stuff like this. I have autism and the comments are disgusting how can you compare the two as they are so different X #abitofeverything
“At least you don’t have cancer” sounds like one of those clumsy things people say when they don’t know what to say. Unfortunately, it comes across as thoughtless and maybe even dismissive. I think you have an amazingly positive outlook, especially considering your situation. Hang in there and don’t let the thoughtless remarks get you down! You have a community of bloggers cheering for you!
I have no words of wisdom for you, only thoughts of healing light and energy that I will send your way, always, and often. You are an inspiration. #abitofeverything xoxo
Oh Anne … What a thing to have to endure. It is amazing how positive you strive to be, but equally hardly surprising that some days it’s just too much. Great post … But heck, the vapidness of that statement: ‘at least you don’t have cancer’ Loads of horrible ailments I don’t have, which should automatically make me feel better?
I haven’t heard of this before but what a brilliant post raising awareness of this horrible illness you’re experiencing 🙁 for some reason, people are always critical of your suffering if there’s someone who they think has got it worse, but you’re allowed to feel and to be in pain and you’re absolutely spot on with this post! hang in there #abitofeverything
I really hate it when people use the “at least you dont have…. X” type comment. It belittles what a person is going though. Im glad you don’t have cancer, Im sorry you do have stiff person syndrome.