I often get asked ‘how do I find a good specialist?’ There are several ways to find one, but it is a lot easier if you already have a diagnosis, so I will start with what to do when you do not have one yet.
If you have been to countless GP’s and specialists and they have not been able to come up with a useful diagnosis yet there are a few things you can start with. You can start by joining a few general chronic illness forums (see the link below) and read other people’s stories and see if you have something in common (that is partly how I got diagnosed after being ill for a long time) and you can ask questions. Or you can Google your synptoms to see if you can find something familiar, but be careful, a lot of illnesses have similar symptoms and you could get overwhelmed! My advice is to be very sceptical. But once you have a slight idea of what your illness could be, you could join online forums or support groups and check it out more in detail. These groups and forums often can help you find a good specialist, they have reviews posted on doctors and links to medical articles as well. You can find them on Facebook but there are also non-Facebook groups and forums.
For those who already have a diagnosis, this is a good web site to check out: But You Don’t Look Sick
Good luck 🙂
I am sure that everybody reading this blog has been confronted with unwanted (often very stupid) advice, kind of like in Chronic Illness Bingo. Probably well meant by whoever says these things, but utterly annoying for us. I think it is a basic human nature to want to help, even if it is with useless information, tips and advice. (Healthy) people often feel confronted when they meet someone with a disability or chronic illness. They feel helpless, do not know what to say and want to be nice. They do not realise that what they say has been said by countless other people before!
I always try to stay calm and friendly (even though I’m boiling inside from frustration) and try to explain things in a manner that is not too extremely medically difficult to understand. Depending on what illness/disability you have you can find information on support websites that you might be able to use for explaining things. For example, I have Elher-Danlos Syndrome and I say ‘I have a connective tissue disorder’, that is an extremely simplified way of explaining but it does the job. If people want to know more I will give them more details on why that makes me so ill. Whatever your illness or disability is, there is a way of simplifying things that even the most stupid people will understand. Generally that will stop the unwanted advice.
Everyone has a story to share – this is what connects us to one another, no matter our family background or where we come from. No matter what you’ve been through in your life, telling your story is the first step to creating meaningful relationships and building a strong support system.
People with invisible illnesses are often misunderstood, blamed, mistreated and judged. When we don’t acknowledge the truth of such illnesses, we are telling these people that they don’t matter or that they have no value. How will people heal if others don’t want to acknowledge that they have an illness in the first place? Society needs to understand invisible illnesses (many of which are neurological-affecting the brain and nervous system) are like any other condition that affects a different part of the body. Until this happens, people with invisible illness will continue to be stigmatized.
By sharing our personal experience with illness, we hope to build bridges with others around us, so that they will know and understand us better. Hiding our illness can cause embarrassment and leave us feeling ashamed about it. There is no fault in being faced with an illness. It is our truth; and how can we form real relationships with others if they don’t know what we go through?
Read more and watch the video here: My Thoughts on Sharing Your Illness with Others
Here is an excellent video you can share with people to understand migraines better:
This is a great article about loss, it is about when an online friend passes away, but I think it could also apply to loosing an online friend due to other reasons:
“It’s odd how we socially construct ways to live our lives. The invisible to-do or how-to lists that allow the word ‘should’ to creep into our psyche. When I go and talk or teach groups of people about ideas of grieving in non-linear, fluid ways of riding the waves of loss there is often a collective sigh at being released from thinking there is one way to react to unexpected life events…”
To read more,