8 Things I Learned the Hard Way After My Diagnosis

I had my first diagnosis in 2009 and felt that I instantly became stigmatized due to my invisible illness. I went home and was extremely sick long term. I was surrounded by mess and didn’t listen to my body because I thought I could “push through it.” I often explained myself to people who seemed committed to not getting it. Here’s what I learned the hard way, a few illness later:

1. Empowerment is possible because you don’t have to be passive. I think too often people believe you need to get your diagnosis, then you can go home and get accustomed to being sick quite possibly for the rest of your life. I don’t think it has to be this way.

2. You have the right to get as many answers as you like. When you are in a doctor’s appointment, you are entitled to get a quick lesson on your disease and biology. Your doctor has the knowledge, so why not ask about the role of your immune system in your disease or exactly how a specific drug is supposed to help you? Get the details!

3. Take responsibility for being informed. For example, you can look up clinicaltrials.gov or clinicaltrials.gov.au to see the latest research that is being done on your disease and join an organization that can provide you with the latest info. Sometimes a clinical trial will be carried out on a product you can buy quite easily.

4. Become proactive. There will be days when it’s not possible. Life never really goes back to the way it was pre-illness, but by accepting your limitations you can work within them and get a few things done. This might be by looking into the National Disability Insurance Scheme (if you’re in Australia) or finding somebody who can advocate on your behalf. Maybe even paying a neighbor to come in and do some cleaning.

5. Stop explaining yourself to people who don’t want to understand, whether it’s friends, family or whoever. I’ll never quite understand how some people decide which illness are acceptable and which aren’t. People with more mainstream and traditional diseases tend to not have justify their days in bed and I’m not prepared to start an advertising campaign for my collection of unconventional illnesses.

6. Even as a mother, it is possible  to overcome some challenges. Of course, it’s not always possible but I can encourage and motivate my family from the lounge.

7. It’s OK to change doctors. It’s OK to complain. It’s OK to have a voice and make yourself heard.

8. I believe alternative medicine is worth a try. Why not consider treating what naturopaths believe to be the general cause of illness? It won’t work for everybody but I don’t want to assume it won’t work for me.

Follow this journey on Waking Up to Health.

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