Sunday, 14 July 2013

30 Day Chronic Illness Challenge: Day 15

Day 15: What would you say to people newly diagnosed with this illness?

Research, research and more research.

One of the things you will have to get to grips with quite early on is the fact you are going to have to do most of this by yourself (unless you are extremely lucky in your doctor and/or specialist), so the best thing to do is to get on the internet and do some research about different ways to help yourself.

For Fibromyalgia I very much recommend (if you're in the UK) FMA UK. They are a registered charity run by unpaid volunteers to help further the cause and raise awareness of the condition. As well as offering information on the condition itself they have some fantastic resources to help you find the right medical attention in your area and also to find local support groups attended by and run by other FM sufferers.

Interstitial Cystitis has been thoroughly de-mystified by The IC Network, and one of their key resources and probably your most sensible first port of call would be their 13 page food list. Grouping foods into "Usually Bladder Friendly", "Foods Worth Trying" and "Foods to Avoid" the list is a wonderful resource to help you start getting to grips with what you should start eliminating in order to hopefully calm the irritation down.

Whilst the internet definitely has its faults, I think it's a invaluable tool for patients of long term oft-misunderstood health problems. I recommend finding blogs, forums, online groups and if you're a little braver sites like Health Rising who keep track of the latest developments in research and treatment options.

It's also a key thing to bite the bullet early on and start to be firm with your doctor, or find another one if your usual one is obstructive. You as a patient have the right to request certain treatment, and crucially you always have the right to a second opinion if you are not happy. The sooner you can start to be a strong advocate for your own health, the easier the process will start to be.

The biggest key point though? You're not alone. There are plenty of us out there who are ready to listen and to try to help you.

Don't suffer in silence when you don't have to.

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