What makes you think?

People who are diagnosed with MS, who live with someone who has MS or who are involved in the MS community are exposed to all sorts of information and opinions about what it means to be diagnosed with MS. Some of this information is correct and some is not.  Some new information makes us see things a different way and much of it can provoke a great deal of thought!

And as much as MS varies between people, the way we think about it varies too. This week I heard MS described as a “miserable disease”.  It made me think.  It seems by the reactions on Facebook and Twitter, it made some of you think  as well.

Wonderwoman saying I may have MS but MS does not have me

There are many different attitudes towards MS. Image from http://www.healthline.com.

So, I think the reason why it made some of us think is that living with MS does not necessarily make someone “miserable”.  It does not remove hope, happiness, support, friends, and family.  It doesn’t define who someone is. And MS is not a one-size-fits-all disease.

It really grabbed my attention and got me thinking about the different attitudes, approaches and feelings we all have about MS.

What about you? Is there something you’ve heard about MS recently that grabbed your attention and made you think?

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13 Responses to What makes you think?

  1. Ula Gordon says:

    Enjoy watching the cricket, especially on hot days. Thank goodness for summer and cricket. Cricket makes me think about all the things I can’t do. Am stuck in a bit of a rut at the moment but will be out soon. 3yo grandchîld is visiting on Sun and everything will be good.

  2. Scott Bushell says:

    I heard that one can go to India and be ‘cured’ of MS

  3. Lorraine Clark says:

    Being a MS sufferer the thing that has grabbed my attention is how well LDN (Low Dose Naltrexone) works and what a revelation CCSVI is. Also how mainstream medicine has such a closed mind to both.

  4. Darlene says:

    hi yes a nature tablet called kalawalla, been on it 4 yrs its help me alot. Can be brought at organic ope . com Anyone on it contact me at stella7741@hotmail.com Darlene

  5. Lisa O'Farrell says:

    What has grabbed my attention over the last few years, is that the medical community continues to unravel the complexities of this disease. And with each new piece of the puzzle, comes renewed hope. Hope is the most important thing for anyone with a diagnosis, whether newly diagnosed or whether a person has had MS for some time. It never goes away, you can never forget you have it but in my experience you can lead a happy and fulfilled life. I am encouraged by all of the breakthroughs because they represent the links in the chain which will lead to a cure. Every option should be on the table in the quest to find a cure but clearly it’s important new treatment paradigms are thoroughly tested and evidence based. It’s important to have hope but on the flip-side false hope can be damaging.

    Those living MS who challenge perceptions about what is possible with MS also inspire me. Carole Cooke, Stephen Papadopolous, Maina Gordon, Chris Gilles – too many others to mention – these people have all inspired me at different times.

    My motto is be careful what you wish for….you might get it!

    • mssociety says:

      Thanks Lisa. MS is such a complex disease. It is exciting to witness the new research findings in relation to the symptoms and causes of MS – all bringing us closer to a cure. And thank you for naming those who inspire you. They inspire us too.

  6. Samantha says:

    I too heard the description of MS as “a miserable disease” on commercial television to a presumably large audience. It made me really angry and sad. Those of us living with the challenges MS presents can do without this type of categorisation – the misunderstanding of this condition in the community is bad enough without unhelpful hyperbole. While it is undeniable that relapses can certainly cause angst, unhappiness and perhaps (on bad days) misery – the complete absence of hope inherent in such a characterisation is deflating. Having been through the roller coaster of medications that didnt work to now have finally settled into a pattern (of meds and lifestyle) that seems to be working for the moment, I am simply getting on with life seems with a moderate level of optimism, hope and determination. There will undoubtedly be more twists and turns, but if we cannI aim to display some grace, humour and courage in dealing with the challenges, if for no other reason than my children deserve the best version of me possible. And on the bad days I stomp my foot (if it works) or my cane (if it doesnt) and get on with it – but please dont short change me by describing me or my life as miserable.

    • mssociety says:

      Thanks Samantha. Very eloquently put! You have a great outlook and I am glad to read that you are living a lifestyle which is working for you. Stay in touch.

    • Lisa O'Farrell says:

      Well put Sam. Sometimes I think the burden of other peoples’ perceptions is just another battle that has to be fought. We all have challenges with this condition (I choose not to call it a disease) but it’s not all bad news all of the time. The biggest battle is the one that takes place between the ears. It’s important to decide early on whether the glass is half full or whether it’s half empty – it does make a difference. I strongly disagree with the ‘miserable disease’ tag. It doesn’t apply to me and many others. Another person who inspires me is Tim Ferguson – one of the funniest and most talented men on the planet – who has carved out a long and successful career despite the challenges of MS and he’s still going strong.

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