Raise awareness! These illnesses are incredibly underfunded for research and treatment. However, in order for us to get proper funding, we need people to know about the crisis that these Invisible Diseases cause. So, call your doctors, write your congress, send out mass emails, contact the media. Be an SOS and call for help! And don't be shy about it. Do your research and help to educate everyone you know about Chronic Fatigue Syndrome (M.E.), Fibromyalgia and Lyme Disease; as well as dysautonomias such as POTS.
Secondly, believe them! Validate their suffering and be an advocate for them. Help them to research proper treatment options and start talking to your communities about how debilitating it is to have an invisible disease.
Many invisible disease sufferers experience cruelty from medical professionals and loved ones who do not believe that a person can be suffering with so many ailments at once; with no supporting blood tests to 'prove' anything. The truth however, is that people who suffer with CFS/ME, Fibro and Lyme are heroically strong and brave. Before Multiple Sclerosis (MS) was discovered, it was called the 'hysteria disease' because nobody believed that the disease was actually happening inside these people's bodies, being that there were no specific blood tests to determine it. We now know that MS is a very serious disease. CFS and Fibromyalgia are very similar, and just do not have a common blood test yet. And Lyme disease does not have reliable results for the testing that is actually offered. Half of the suffering for so many people with any invisible disease is from the lack of support and understanding from those around them.
Just because you cannot see another person’s suffering does not mean that it does not exist. It is incorrect and even cruel to say that any of these Invisible Diseases are psychosomatic or hypochondria manifestations, or "all in the head". These are serious physical ailments that cause a reaction of depression and anxiety. There is very little treatment that works for everyone. All people who live with invisible diseases are to be respected and even admired for their pioneering endurance and strength.
One last thing that you can do to help someone who suffers from an invisible disease is to go out of your way to brighten their day. Make them laugh, write them a letter filled with your love for them, surprise them with a loving gift. Just make sure that they know how important they are in your life. ...So, validate their suffering first! Then, help them to find some happiness through all of their suffering.
Sunday 6 June 2010
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Hi John
ReplyDeleteWell done you for raising awareness. I am pleased to see you are aware that many with Fibromyalgia can infact have Lyme Disease.
I got bitten here in Guildford and was ill 61/2 years.
I was diagnosed with Fibromyalgia, ME/CFS, Arthritis, Muscle Weakness, Muskulo skeletal disease and then Polymyalgia Rheumatica. It took 5 doctors and 3 rheumatologist 4 years to diagnose me and then only because my symptoms significantly improved on a chance course of antibiotics. I had visited the surgery at the times of bites, bulls eye rashes and summer flu' as well as migrating arthralgias all red flags for Lyme Disease all missed by other doctors. Me. well I though Lyme was unique to USA if only I had known you could get it in the UK I would have saved some of that pain.
I started a blog to raise awareness of lyme Disease, Looking at Lyme Disease.
Perhaps you could consider putting a link to UK charity www.lymediseaseaction.org.uk on your website as I am sure there will be others diagnosed with Fibromyalgia who will never have even considered the possibility of lyme Disease, and even if they did get blood tests done they can miss up to 50% of cases.
Best wishes to your wife she is lucky to have such a caring husband.