The 'Trendy' Disease. In The Lyme Awareness UK Newsletter.
The Guardian newspaper has really let me down & angered me after their Sunday article about Lyme disease.
Just last Friday I praised the media for helping to spread awareness and the message about Lyme after Matt Dawson came and spoke out about his personal struggles with the disease.
Now after they have done further digging, it has come to their attention the amount of public figures who have suffered with the disease and being open about their struggles. Mainly America celebrities such as Alec Baldwin, Bella Hadid, Kelly Osborne, George Bush, Yolanda Hadid, Avril Lavigne, Ben Stiller and Richard Gere to name just a few.
They speak of endless years of treatment and being forced to take a step back from their careers as they became ever-more bedridden. They all now have the manage the disease and keep up treatments experiencing regular relapses.
At the time many kept their struggles to themselves due to the medical industry's ignorance towards the disease. In fear of them receiving the treatment they needed and being open about the treatment could cause their Lyme doctors to have their medical licenses taken away and their careers ended.
Now that Lyme is becoming a dangerous threat to society and more doctors are having to gain knowledge on the disease it is being spoken about furthe.
This is a huge problem to the health industry- Lyme is an extremely, extremely complex disease that comes with many other deadly co-infections and means each patient is unique . Not ever being able to kill the bacteria means that on-going treatment is a must to keep symptoms and the body functioning as well as it can. This is too much of a strain on an industry already truly overwhelmed. They can't afford the 'chronic Lyme doesn't exist' phrase to be found out to be a lie. Yet thousands and thousands of us continue to suffer.
Due to use all now standing up for ourselves and fighting to have our voices heard after endless years of being dismissed, misdiagnosed and called crazy they want to silence us once again by saying that Lyme is just a 'trend'. Are you kidding me?
This disease is hell. Not only can we not alter the test results, or our symptoms but do you really think we want to spend our lives suffering endless pain, trying endless treatments and putting ourselves through hell to get better?!
Neither is it our fault that this issue is spreading and there seems more of us that previously. We can't control global warming that means the ticks and bugs are sticking around longer. Nor can we control the ignorance in the health care system that at present means we don't get the treatment required and so go on to have further problems.
Nobody and especially the media would not deem let's say breast cancer as the 'trendy' type of cancer to have. We can't help contracting these diseases! Treatments are just as brutal, the hell just as real. The media wouldn't dare slate cancer so why should it be any different for any other debilitating disease?! Just because it is less known and a newer disease the more we are ignorant towards it the worse and more serious the disease becomes. This is the issue we have facing us now. For the passed 30 years Lyme has been ignored - 'it doesn't exist,' 'the tests don't stand in this country.' Etc. That now the problem has blown up.
Why do we never learn from our mistakes or learn from history as this is exactly what happened with HIV and now Lyme is now said to be a bigger epidemic than HIV.
Maybe it is a process we simply have to go through to be recognised and listened to. Look at all the bad press HIV received back in the day.
Is it right that we have to go through this scrutiny?
Boy I wish could give those editors the gift of a day living with Lyme disease. I wonder how long they would last before no longer wanting to be a part of the 'trend'. I for sure would put money on them not seeing out the day.
Lyme is a serious, hellish disease that currently is said to be the cause behind 1,200 suicides in the US. Isn't a 'trend' supposed to be worthwhile, be for a cause or/and bring happiness, not draw people to these extreme lengths? It's truly upsetting.
Like someone suggested in the Lyme group - we need our own march, all dressed in lime green, try and silence us then!
This sort of ignorance we have, must use to drive us to keep fighting and not allow it to get us down.
We continue to fight!
Keep going my little hero's !
I am so proud and happy to announce that my Sophantastic blog and my post that was also published on the Mighty.com - 10 Reasons The Chronically Ill Are Still Worthy has been recognised by Lymediseaseuk.com. It is featured on the front ( home ) page of their website and will also feature in their September newsletter. I am so proud and honoured to be a part of raising more awareness, Lyme awareness UK and have my work recognised. As you all know I set up this blog to help in my own healing journey as well as advising you all. So the more people I reach, the bigger platforms I can be a part of and the more awareness I can spread makes all the hard work beyond worth it.
Thank you Lyme disease U.K. for this amazing opportunity that means the absolute world to me!
Please check out lymediseaseuk.com and donate, become a part of the Lyme clan and get involved.
I had to include the picture of my Mama and I on my Lyme disease UK picture because she fights with me everyday and deserves all the recognition and more she can get!!! I wouldn't be here without her!
Here is the link; Lyme disease U.K.
Love you all my hero's !