15 things someone suffering from a mysterious, chronic illness wishes you to know

At my weakest in November 2015

At my weakest in November 2015

I recently read an article by Dr. Audrey Komrij Jones, lawyer and campaigner for the awareness of autism in Malta, entitled “19 things the mum of a child with autism wants you to know”. The article was really inspirational and taught me a lot about a subject I must admit I knew very little about.

And because I remember how little I knew about mysterious illnesses such as chronic fatigue syndrome, extreme food sensitivities and multiple chemical sensitivity before being diagnosed with them in 2015, I decided to write a similar post about these illnesses (and other related ones like fibromyalgia and anxiety).

Since it’s based on my ideas and feelings when I was at the height of my illness a year ago rather than now that I’ve recovered, it was easier for me to write this article as though it was actually written then  (more about my health journey here). 

So here’s what I would have wished you to know at the time.


Things to avoid

1. DON’T treat us any differently than you used to before. Being chronically ill doesn’t change who we are. We’re trying to live as normal a life as possible so being treated the same as we’ve always been treated is important to us.

2. DON’T keep asking us what caused the illness or trying to come up with theories of what might have caused it. We’ll probably never know what did cause it. And spending too much time trying to understand makes it even harder.

3. DON’T ask whether this is a physical or psychological illness. Our symptoms are real, it’s far from being all in our mind. We want to be well and this isn’t something we can control. 

4. DON’T tell us to keep positive. We’re trying to be as positive as we can. But like everyone else, we have our meltdowns at times. When even getting out of bed in the morning is a struggle and when your reality has come crashing down, some days it’s hard to be as cheerful as you’d like to be.

5. DON’T tell us to just buck up. We try that every day. But at times we just can’t. 

6. DON’T keep telling us how well we look. I know you mean well but sometimes it’s tiring to keep hearing that when we feel terrible. And keep in mind that it’s possible to have an invisible illness with no external signs.

7. DON’T compare our illness to that of others. Again, I know you mean well and it is nice to know it’s not just us passing through something like this. But still every illness is different and we don’t necessarily feel the same as your friend does.

Things to do

8. DO tell us you're thinking of us. These illnesses can be very isolating by their very nature. Just knowing you’re thinking of us can make us feel much better.

9. DO be ready to not know what to say but to just sit in the mess with us. We know you don’t have all the answers and that at times you might not know what to say. But that’s not what we’re asking for. Your support is the most important thing to us.

10. DO offer to help when you can. I had such an excellent support system through my husband and family (especially my mother who did much more of my housework and shopping than I did when I was ill) that I didn’t really need any external help. But not everyone is as lucky as I was. And it still used to mean the world to me when friends would offer to go shopping for me or to help out in other ways.

11. DO ask us whether we want to join when you're planning something, but at the same time tell us that you understand if we can't make it or if our plans have to change at the last minute.

12. DO ask what you can do to be able to meet us. It meant the world to me that my family and friends were willing to use my chemical free laundry powder and cosmetics just to be able to meet me. And thoughtful gifts like apples when my food choices were very limited, flowers and a cheer-me-up box all the way from Australia really brightened the darker days.

13. DO ask questions but understand if we don’t feel like speaking about it much. It’s nice to know people are interested. But at times we’re just tired of talking or even thinking about the illness.

14. DO suggest solutions without putting any pressure. If you know of something or someone who might be able to help us, do suggest it. But understand that we might be tired of trying new things or now might just not be a good time for us to think about something new.

And finally and most important of all:

15. DO believe us. I was lucky to be surrounded by supportive people who always believed me, no matter how unbelievable the situation seemed. But many people face disbelief even from loved ones, which makes coping even harder. 

I too remember having serious doubts about how someone could have debilitating reactions because of everyday things like shampoo until it started happening to me. So understand that there’s no reason for us to want to make something like this up. It might sound beyond belief, but unfortunately it’s our reality. And being believed would make our difficult reality a whole lot easier. 

Click here to find out how I recovered from my chronic illness or feel free to contact me. You can also subscribe to receive updates at the top of the page.