Let’s Take The Invisible Out Of It

I Googled invisible illness. I know what they are. I live with them every day, but I wanted to see what the internet had to say about them. The internet offers up a basic and obvious definition – a chronic health condition with no outward signs of illness.

Well, duh. I know that. My fellow spoonies know that. Even the average non chronic illness sufferer probably knows what an invisible illness is. The average person doesn’t know it like a spoonie knows it.

I will always firmly believe there is no such thing as an invisible illness. Even though the very definition of invisible illness means a chronic condition with no outward signs of illness. I believe that we all just need to take the time to look.

Because of my MS, I have problems with balance. I often stumble and have difficulty going from sitting to standing, and will fall. Is that invisible? No. I have tremors that cause me to drop things. The mess that can cause certainly isn’t invisible. I faint easily, for a variety of reasons. That’s not invisible. My muscle jerks and spasms can be quite noticeable.

I have cognitive difficulties that mostly cause me to seem spaced out randomly, make me forget the words I need, and do things like put my house keys in the freezer. If you know me, those things aren’t invisible either. Take the time to look. It’s so simple.

But you, my healthy friends, co workers and associates, have blinders on. Most of you don’t, or can’t see the truth. Most of you have nothing but good intentions, but you don’t really see me. I don’t blame you, it’s hard to understand things from a perspective so different from your own.

So let’s take the invisible out of invisible illness. Notice me. Notice how I struggle to get up. Notice when I tremble and shake, or look weak. Notice when I seen exceptionally clumsy. These are signs of my so called invisible illness.

Notice me trying my hardest to push through all the pain and all the struggles. Pay attention. Even when you see me happy, it doesn’t mean that my pain isn’t there. It means that I managed to be stronger than the pain.

Invisible illness can be horribly isolating, even when you aren’t alone. It makes me feel invisibile. All I want is to be seen. Visible.


Who knew I could be grateful for my MS? I’d love to have never been diagnosed with it, to never have to deal with the pain and all of the struggles. But I do have MS, and it’s here to stay. You know, you can run, but you can’t hide. Some gifts gratitude have given me are:

1. Gratitude has taught me to be more open and made me even stronger. Dealing with almost constant pain and some really strange symptoms have made me learn that I can take a lot more than I thought I could. And I have to be open when I see doctors so much. That openness has automatically transferred to other parts of my life.

2. Gratitude has made it so much easier to relate to other people and their issues.

3. Gratitude has shown me that people are so much more than their outer shells.

4. Gratitude has made me appreciate the beauty in the everyday moments so much more.

5. Gratitude for my MS has made my relationships better, and eliminated the ones that weren’t worth it.

6. Gratitude has lead me to service. It has guided me to volunteer with my support group, and to be an activist in so many ways.

7. Gratitude has taught me to not sweat the small stuff as much, and to realize that most things are small things. It has also taught me to pick the battles I do choose to fight very carefully.

So, to wrap it up, I’m not happy I have MS, but it isn’t going to turn me into a miserable person, no matter how I feel. Never ever give up!

For everyone, with or without chronic pain

I’m 14 years old and I’m not great at this. At writing. I want to talk about my chronic pain, but I don’t know how. If you think there is a word, a feeling, an emotion that could even come close to describing how it feels, then you are wrong. Have you ever broken a bone or been in an accident? If so, then I envy you. If you broke a bone, the doctor can give you a solid cause, treatment and recovery time. For me, and anyone else with chronic pain, it is different. We don’t know how it happened. We don’t know how to fix it. We don’t know if it is going to stop. If you can imagine the feeling you get when you first see the words ‘chronic pain’ written on a diagnosis sheet, then you have more empathy than even the best actor. And best actors’ empathy doesn’t even come close to what you need to imagine you have just been told you are going to spend a lifetime in pain. I went from an independent person to an ‘invalid’ who had to call for help even getting up. That is what chronic pain does to you, and as I said, there are no words to describe that feeling. You can be sad, angry, frustrated and exhausted at the same time as the pain, and sometimes it is just too much. If I say I can’t do something, don’t push me, you are going to just make me feel even worse, and believe me, that is last thing any sufferer if chronic pain needs. Just because we can do something one day doesn’t mean that we can do it everyday. If I was walking yesterday, that doesn’t automatically mean I don’t need the crutches, the support and sometimes, the days I can’t get out of bed, anymore. That doesn’t mean I am cured. It just means that yesterday was a good day and today is not. No amount of medication can change that, and you need to understand that. If you tell me about some ‘miracle’ treatment, chances are I have already tried it and as I am still here, with this pain, it hasn’t worked. If I haven’t heard of it, I’m not going to get my hopes up about it. If this is a cure you can get in the health food aisle of a supermarket what makes you think that it will be more effective than the expensive procedures I have already tried? To all those who do not have chronic pain, please just try and accept that you are never going to be able to understand what it is like, living with your demons. And lastly, to all those who (like me) have chronic pain, my heart goes out to you. We may not be able to fix this, but we can master it. It may take months, it may take years, but eventually we are going to be able to say to the doctor ‘I can do this, or I can do that now, even with this condition’. And that day will come, no matter how far away it seems now. At the minute, I can’t see the end of this road, but I know it can’t go on forever. It won’t go on forever. The road may end, or it may just change direction but whatever it may be, change is coming, whether it is coming quickly or slowly I don’t know, but I do know that it is coming, and that it will be for the better. Stay strong.

My life is hell

I’m a 24 year old female in chronic pain and no doctor can figure out why it’s starts right under my rib cage on my left side and radiates down my abdomen and back. I have had a exploratory laparoscopy I have had a endoscopy and colonoscopy and they still can’t figure out whats wrong with me I throw up everything it seems to get worse after I eat or try to eat. The er says I’m there for pain meds but I have never not once asked for pain meds. I’m at my wit’s end I can barely get out of bed because of the pain and this has been about 5 months since I’ve had this pain and it seems to be getting worse. I’m to the point were I want to kill myself because I just feel like I’m crazy

MRN Loxapine caused Drug Dystonia

Dr.Hunter abused Loxapine with my cancer treatment in 2011. I was a victim of medical neglect 2003-2011. Due to second opinion test results Within normal limits. No abnormal cells. The doctor moved to Ottawa. The Houselink workers Pam Skinner and Paula Tookey and Cynthia Turner and Pauline .G. Morriss and Fiore Mester etc:; cancelled the appointment. They watched me fall in the cracks. Sue and Catlin phoned the C.A.S to confirm the visit with my daughter. My sister got drunk before the visit. She took all my TTC and cab fare away from me and i had a dump. Jason and Cathy moved out cuz of Sandra’s alcohol abuse. Jody and Jaipreet bailed Sandra out of her no tresspass order. The bad policeman bailed Sandra after she buried Fluffy in Cherry Beach. Sandra phoned me in the Cancer Ward 2 weeks after it happened. Sandra found it in Kelly’s closet. The policeman bailed Sandra out after she kicked Susan in the leg twice. Dr. Samuel Malcolmson got his patient pregnant. He is not my doctor anymore. I cant bend my arms, cant walk, cant chew my food, saliva. I had problems closing my eyes at night, blinking and eyes rolling around, chewing my inside of my mouth.

I reported him to the college. My brain was paralyzed. I cant pull my pants up. I cant shower and bathe. Drug Dystonia is in my Blue Card hospital card MRN now. Loxapine caused Dystonia. I still have it. I take Serequel now. I reported it to CCHR.

My life with CRPS

Hi my name is Marlene Taylor. IM 47 YRS, I feel like I’m much older. I have been diagnosed with this disease since 2009, everyday theres something. Just when I think I have learned to deal with one problem theres another. Well today my clothes is a bother to me. I wanna pull my skin off and just snatch the problem away. I never felt this way before so I’m guessing. This is the disease progressing new feeling and emotions just when I’m learning to handle the pain in my hand and neck not to mention both my legs even eye problems. Now I’m dealing with the feeling of clothes, how they’re bothering me wow. Help, HELP ME PLEASE SOME !!!!!! COULD USE SOMEONE TOO TALK TO

15 – 54 A Life of Pain.

I was 15 playing on a football team for Sequoyah Indians . I was a big stout young boy Unstoppable. One afternoon we had a scrimmage with the varsity team, they all try to block me but could not so they put three men against me one fell on his hands and knees behind my legs the other two kept pushing I could not move my feet. my cleats were stuck in the ground and as the other two kept pushing I screamed and pleaded with them to stop but they did not when it was over my feet were in the ground and my helmet was touching the ground bend over double backwards. The pain from that was intense as I lay there for about 5 minutes I wanted to cry but I did not think that I was hurt in any long-lasting compacity I did not see no blood broken bones or anything like that.

So I gotta finish the game and that night my right leg hurts so bad I prayed to God and I was a True Believer then. I asked him to please stop the pain please stop the pain after being up most of the night and I finally fell asleep my life was changed forever that day.

And every day since that day I am reminded of it is constant pain and it gets worse with age does my bones start to deteriorate. It started it what they call a degenerate bone disease comma and then the lower three parts of my back I have no cushion at all it is bone against bone so I deal with that and, being a big boy I was also bullheaded. When I was 24 I had a roughneck throw off a plate of Steel off the rig floor and came down and hit the back of my neck I did not get to go see the doctor until the next day.

When I was 26 I was thrown from the back of the truck to the hard ground on a rig location I hit so hard it left my head elbow shoulder imprint in the hard shell I've never been the same since.

Just because I was bullheaded I managed to stay working until I was 40. When I reach 40 depression despair hopelessness all come flooding in and I lost it I couldn't hold a job the pain was too much and I contemplated suicide everyday was on my mind all the time what's the only way I knew that I was going to be out of pain.

One day I saw a brochure saying that if you live in pain to come see us that we may be able to help. It was from a painmanagement clinic which I didn't know nothing about and since that day my life has changed for the better I still live in pain but I'm not constantly thinking of it it takes enough pain away but my life is tolerable again.

And now the lawmakers the DEA people who have never felt pain want to take away the only thing that works. I don't want to go back to those dark days of thinking of how to end it I have a responsibility to my pets and one person that I really really care about who depends on me. I don't know what to do to plead with the state legislature I am only one man.

And I know there is a lot of people out there who live in pain daily chronic pain that never leaves. What it does to your mind is beyond being immoral and irresponsible for the government take our medicines away. I always feared this day would approach and as it gets closer my fear becomes more real.

If they take our medicines away there is only one outcome left for me and I think a lot of other people also , I know I paid in all my life in pain I still work seven days a week 24 hour call. I paid my dues. Now they're wanting to take away the only relief that helps. What kind of country do we live in to do that to their elderly is that why we have a Marine Corps and Armed Forces to protect those who can't protect themselves? I'm living in fear but for the time being I am able to keep the pain at Bay. But what about that day that I've been dreading for so long when it comes what then that's a big question mark because I know I will be so unstable there's no telling what I would . Signed by Living in Fear.

You are not alone