A radical thought

I know for a fact that what I am going to write today is going to really shock some people, especially as I spent over 20 years fighting to get mine. Within 6 months of getting it, the most irrelevant thing, anyone every gave you, is your diagnosis. OK, now put your jaw back where it should be and let me explain. I like everyone who knows there is something really wrong, I continually kept going back and back to see my Doctor. I was in some ways lucky, as I moved around the country a lot and every time I moved, the NHS always lost my notes. Now I know that doesn’t sound like luck, but it was, as it meant I could start all over again, in a new hospital, with new and different consultants, without them just looking at past tests and dismissing me. 20 years of knowing you are ill, not to mention living in pain and with all the other things, is a long time and a lot of tests. I was just coming to what I thought, was my final run at finding the truth, when they diagnosed me with Fibromyalgia. I still wasn’t convinced, as no matter how they tried, it didn’t explain the type of dizziness I was experiencing. Then one consultant decided to go one step further than any had before, he too know there was something more major going on, and it was being missed. I had my MRI and there was my diagnosis, MS, a few more tests, and my full diagnosis was suddenly clear, PRMS. So why is it only of value for six months, well it’s simple really, all your doctors now knows and after you have told your boss and the government, and of course, family and friends, it really doesn’t matter what your condition is after that, outside of your medical treatment. It is totally irrelevant to the rest of your life, what matters to all of us, are our symptoms, and how to treat and live with them. I had blindly fought for diagnosis, in the belief that it was going to be a magic wand, a life-changing event, and it wasn’t, life just went on as it always had.

I suspect that I did what everyone does once you know what is wrong with you. I put on a set of blinkers, and saw, and learned only about the conditions that I have, after all, surely they were all that mattered now. I searched site after site that I found online, I read blog after blog, but I kept coming up against problems they didn’t cover. Then one day, about 4 or 5 years later, I had a brainwave, instead of putting the words “Multiple Sclerosis” in every search, just search the symptoms, like I used to. In the gap in time since I last searched that way, the internet had expanded by millions of miles and to my shock I was finding the answers I wanted, not listed under my conditions, they were under other ones. The more I searched, the more I found it happening. There were people out there not living with PRMS, or even just MS or Fibro or any of my other conditions, who were experiencing exactly what I was and occasionally, I even found an answer or two that helped. It didn’t matter that the solution was found by someone with Parkinsons or Lupus, their answers worked for me, because they too, were living with the same symptoms. Then I started to hit my head of a brick wall again, I made the mistake of talking to some of them, and in several cases came up against an attituded that I didn’t understand. If I dared to offer an opinion or a piece of advice that had worked for me, some slapped me down as how could I know, I didn’t have what they had. That to me was total madness.

Those of you who have found me through twitter that about half of the tweets I put out about my blog don’t my condition anywhere. That is my reason why I do that. I prefer to just say “Chronic illness” because that way, I am reaching more people, people who don’t really need to know what my diagnosis was, as we all shared more in common than many of them realise. I don’t have the numbers to prove it either way, but I am almost certain that the majority of the people who read my blog don’t have MS, Fibro, COPD or any of my others, and outside me, don’t know anyone who does. I have worked hard on writing what I believe is an all-encompassing style, that talks about the realities of illness rather than just a condition. Clearly, yes there are posts that have to be condition linked as that is how I experience them, but it doesn’t mean that is their only purpose. The longer I write and the more I try to break down this condition centered approach to health, the more I can’t help but think it is the way to go, especially when it come to supporting all of us with chronic conditions. Trust me, if someone can tell me how to reduce my pain levels, well I don’t care what is wrong with them, I would just be grateful for their advice.

It has struck me that there is a huge resource out there that is being missed, simply because thanks to the medical profession, and their understandable way of thinking, condition has become king. It has led to people all around the world into raising money for the care of people with specific conditions, loads of money. Please note, I said care, not research, that is totally different. That money has been spent building centers where they can go for none medical treatment, to join support groups and so on. Some of these buildings are, on the whole, pitifully underused, only open for a part of the week and locked up unused the rest of the time. Nowhere is ever going to have enough people with an individual condition, to fully keep these places going 7 days a week. In that self-same city or area, I will guarantee you that there are right now people trying to raise more funds for similar centers, but for different conditions. There will also be even more people with other conditions, that no one is ever going to build a center for, as there simply aren’t enough cases of their condition, for it to enter anyone’s mind to do such a thing. I am sure that you will have already worked out where I am going. Isn’t it about time, that the blinkers came down, that the obsession with condition name, was put to bed and people got together, to help people, not conditions. Not once online, have I come across such a place, a center for the chronically ill, that welcomes all, who just need support and friendship.

The center Adam and I went to when I was first diagnosed, was just like that. Totally MS only, open three days a week, offered a huge range of none medical therapies, which had to be paid for, but were lower than anywhere else and always trying to raise the money to cover just their basic costs. These days, the overheads for any charity are high. Look anywhere in the world, you will find small groups all trying to raise funds so they can offer support, or in some cases aid for equipment that might be needed. Isn’t it about time that all the names were dropped and that they worked together to help all who need help, not just for set conditions? Wouldn’t it make sense for them to get together and to share their resources? It has been happening right through my lifetime and longer, that there have been centers for the elderly, why aren’t there the same for the chronically ill? It wouldn’t be for me, as I’m not that sort of person, but I can see a clear need for somewhere where those who haven’t retired due to age, but health, can get together, socialise and support each other. You don’t need a degree in medicine or social work, to be able to see that chronic illness causes depression and isolation, such places could really help. Small groups can’t survive any longer, swallow the pill, drop the name, and spread their wings wider and there’s a chance that they could together.

It just seems so wrong that that diagnosis that felt like a huge relief, the answer to all our problems, rarely is, and not just medically. What good is a name, if that very name, keeps you locked outside from the help that you need? Too many forget that their diagnosis is really only for their doctors, as without it, well they wouldn’t know how to treat us. Oddly, if you look closely, even our drugs are interchangeable a lot of the time. What makes our lives hard, are our symptoms. Look at any list you like and you will find that we share so many of them. If we share the symptoms, we also share the problems they cause. Not to forget all the problems that appear, just because we are ill. Yes, an MS center may sound like a great place, personally, I’d rather see a chronic illness center. It doesn’t matter how you landed up in a wheelchair, it’s the fact that you’re there that matters. It doesn’t matter how we lose our memories, or what causes the pain that keeps us awake. It doesn’t matter what that diagnosis said, or if we actually even have one. People in pain, be it mental, physical or both, need help, help that our doctors can’t give, help that comes from those who just like us, are living with it. The truth is, it is our doctors who need a diagnosis, our governments who need to tick boxes, and society that demands we live in the correct box, not us. All we have ever really wanted is to just feel better, to be understood, and to be able to live, as well as we possibly can.

Please read my blog from 2 years ago today – 02/11/2013 – Opinions

I know that last night I upset Adam when I went to bed, he was doing something in the kitchen and I went through to tell him that I had had enough for another day. He started to follow me, so he could tuck me…..

6 thoughts on “A radical thought

  1. I do understand. From the time I started getting sick it took 12 years to get a diagnoses. Back in the 80’s the internet was just getting started and drs were still gods. There was so little respect for women’s symptoms all they wanted to do was give me anti-depressants.by the end of the 90’s I got my diagnoses and there was enough on the internet to research. My problem has always been that my symptoms don’t always fit the disease. They still don’t. Drs still blow off the ones they have no answers for. I went to other forums and found people, who if nothing else, understand. Now, it looks like I’m beating Hep C. The meds are working. My friends and family, not understanding, will think all is okay now. But that’s okay. My kids will stop worrying. They’ve worried enough. They deserve that. But I won’t automatically be “well”. But hopefully it will stop causing more damage. It won’t fix what it’s done already. I have often thought’ “Am I the only one with this symptom? Why do drs look at me like an alien? So I go and search out other people who have the symptoms. Maybe there is something else going on they missed. So you are very right. Everything doesn’t fit in a little box. Drs used to be looked at as knowing everything but they are fallible people just like everyone. Plus, they don’t have time for me if it isn’t making someone more money. We have to take our own initiate for our care, and we get that from other people who understand what we’re going through. Drs don’t really know what it’s like.

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    • So many more could be helped if we just break down the old rules and looked at illness on the wider view, rather than just narrowed conditions. I guess I’m probably dreaming, but someone has to, or nothing will ever change.

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      • The medical world is so compartmentalized. Most doctors specialize because there is more money in being a specialist. They don’t learn things outside their box. They ignore things they don’t understand. I went to a dermatologist a few weeks ago. ( took me 6 months to get an appointment) My skin is sticky from the neck up, like scotch tape. I can stick toilet paper to it and I can’t wash it off. The only answer I got was, “I’ve never heard of that” End of discussion. He was “going to check into it” but I never heard back. I drove 120 miles for that. They probably billed Medicare and Medicaid many hundreds of dollars for that so their job was over. It will take the people coming together and building a network to help people understand their symptoms. It would be a great project for someone with more web page building savvy than I have.

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      • The medical system is very different in the UK, not better just different. I have lost count the number of doctor who have admitted that they know nothing about PRMS, including my own family doctor, he knew nothing about MS at all, that’s changed though, we’ve been educated together.

        I am guessing you don’t have the centers I am talking about in my post. They aren’t run by the medical profession at all, they are run by charities, but just as polarised. A website would be a start, but really hard to set up, without the “conditions” taking over. To many can’t see past them 😦

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      • Back in the 80’s AIDS was so huge and people were dying everywhere. They actually found the Hep C virus at the same time but swept it under the rug because AIDS was hitting hard. Since there were no meds it was a death sentence. I lost a very good friend, Anthony, who died about 6 weeks after it was diagnosed. We had been planning a trip to Japan. He and I recorded a song I wrote and we were taking it as a gift to a man named Daisaku Ikeda. Anthony thought he had the flu and couldn’t go. Years later – early 2000’s – the song was played with an orchestra. Two other people sang but I did fly out to San Francisco to hear it performed. My uncle, who is gay, lost 27 friends. (that pulled out a memory!) Doctors didn’t really know about Hep C. But Hep c is killing more people than AIDS. Not enough livers to go around. The didn’t clean up the blood banks until 1993. Many people got Hep C from blood transfusions. That could have been prevented. But fortunately, AIDS doesn’t have to be promised death sentence anymore. People are living with it a long time – if they live in a country where they can get the meds.

        No we don’t have centers but I have been lucky enough to be poor enough now to get medicaid. I lost everything when my illness took over. I had a retail store in Key west. I just locked it and had to walk away from it. Medicaid covers everything I have had done and only have a $55 monthly payment. I know my medical bills were way over a $1m. Honestly, I’ve had good doctors. I really can’t complain. But I know they are limited and can’t fix everything. People need to be their own advocates to get things done.

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  2. IF I TYPED FOR HOURS I WOULD NOT BE ABLE TO FINISH MY COMMENT. IT SADDENS ME THAT YOU AND YOUR BRAIN CAN’T REACH THE(( DECISION MAKERS.))THOSE OF US WHO ARE CHRONICALLY ILL NEVER LEAVE THE HOUSE ANYWAY.I NEVER TELL ANYONE MY DIAGNOSIS(S).I DON’T HAVE M.S OR PRMS , YOUR SYMPTOMS, HOWEVER ARE A LOT LIKE MINE. A FEW OTHER BLOGS WITH DIFFERENT “DIAGNOSIS”,ARE LIKE MY SYMPTOMS TOO. YOUR POST TODAY IS SMARTER THAN ANY MEDICAL JOURNAL I HAVE READ. I WISH THAT WE COULD ALL BE HEARD; THEN OUR LIVES WOULD IMPROVE.

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